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04-15-2018, 03:27 PM   #13621
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I am not sure if I take Celebrex since I am allergic to sulfa antibiotics but I was planning to ask about other NSAIDs like Diclofenac/Voltaren and can be very helpful for OA and RA. I would prefer to try something that doesn't cause GI bleeding risks or CV risks like Tramadol (as-needed) but I don't know how she feels about prescribing it. Since the other rheumy shut me down like I was drug-seeking, I am apprehensive about bringing it up. I don't even know if Tramadol is an option since I'm on two antidepressants - Wellbutrin and Effexor - for depression/anxiety AND an antipsychotic for mood swings.
My daughters both have sensitive stomachs and it took a LOT of trial and error to figure out which NSAIDs they could tolerate. Besides Celebrex (which you can't take), they had success with Relafen and Mobic. Both are much easier on the stomach than Advil, Naproxen (Aleve), Dolobid, Voltaren (caused horrible nausea), Arthrotec, Tolectin, Indocin etc. We tried a LOT of NSAIDs before we finally figured out what worked best for them.

They also both needed a PPI - they cannot tolerate NSAIDs at all without one. NSAIDs are actually considered better than pain medications if you have inflammatory arthritis (like RA) because they actually treat the inflammation vs. just masking the pain.

If you have osteoarthritis in your neck, there are some options for that. They can do various kinds of steroid injections and if those work, a radiofreqeuncy ablation may give you longer lasting pain relief.

As for pain medication, I would think carefully about bringing it up because of the hysteria around the opioid epidemic. Most rheumatologists will not prescribe pain medications anyway. They treat the disease - in RA, that would entail treating the inflammation. In Fibromyalgia, treatment would get over-active nerves to calm down. They tend not to prescribe opioids and if you need further pain management, then generally they refer you to a pain management specialist.

For Fibromyalgia, trigger point injections done by a pain management doctor might help - they helped my daughter a LOT.

In terms of actual pain meds, with two anti-depressants and an anti-psychotic, I don't know if they could even prescribe something like Tramadol. It definitely interacts with SNRIs - could cause serotonin syndrome. I am not sure about Wellbutrin or the antipsychotic.

Like you said earlier, Effexor is supposed to help with pain, so hopefully that will kick in soon.

For RA, Plaquenil is an option. Methotrexate is what is used most commonly. But I would wait and see, because while your symptoms may sound like RA, it's hard to tell without a doctor examining you. With rheumatic diseases it's hard to tell what is causing what because of overlapping symptoms.

Hang in there and good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-15-2018, 06:43 PM   #13622
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My daughters both have sensitive stomachs and it took a LOT of trial and error to figure out which NSAIDs they could tolerate. Besides Celebrex (which you can't take), they had success with Relafen and Mobic. Both are much easier on the stomach than Advil, Naproxen (Aleve), Dolobid, Voltaren (caused horrible nausea), Arthrotec, Tolectin, Indocin etc. We tried a LOT of NSAIDs before we finally figured out what worked best for them.

They also both needed a PPI - they cannot tolerate NSAIDs at all without one. NSAIDs are actually considered better than pain medications if you have inflammatory arthritis (like RA) because they actually treat the inflammation vs. just masking the pain.

If you have osteoarthritis in your neck, there are some options for that. They can do various kinds of steroid injections and if those work, a radiofreqeuncy ablation may give you longer lasting pain relief.

As for pain medication, I would think carefully about bringing it up because of the hysteria around the opioid epidemic. Most rheumatologists will not prescribe pain medications anyway. They treat the disease - in RA, that would entail treating the inflammation. In Fibromyalgia, treatment would get over-active nerves to calm down. They tend not to prescribe opioids and if you need further pain management, then generally they refer you to a pain management specialist.

For Fibromyalgia, trigger point injections done by a pain management doctor might help - they helped my daughter a LOT.

In terms of actual pain meds, with two anti-depressants and an anti-psychotic, I don't know if they could even prescribe something like Tramadol. It definitely interacts with SNRIs - could cause serotonin syndrome. I am not sure about Wellbutrin or the antipsychotic.

Like you said earlier, Effexor is supposed to help with pain, so hopefully that will kick in soon.

For RA, Plaquenil is an option. Methotrexate is what is used most commonly. But I would wait and see, because while your symptoms may sound like RA, it's hard to tell without a doctor examining you. With rheumatic diseases it's hard to tell what is causing what because of overlapping symptoms.

Hang in there and good luck!
Thank you for your guidance. I really want to stay away from painkillers if at all possible. I hope that the new doctor will explore options with me about the arthritis unlike the other doctor who didn't even try to treat it. I will do everything on my end that I can like exercise, stretching, OTC meds, etc.
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04-15-2018, 06:55 PM   #13623
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Yes, I would just make sure to tell the new doc you are very sensitive to medications and muscle relaxants did not work. And be sure to tell her all the things you are doing - the stretching etc.

It may also take a while to diagnose you - it can take months in the rheumatology world. Some things are hard to diagnose - like connective tissue diseases or SLE.

RA should be faster because your joints will either be inflamed or not...it's fairly easy to tell with the hands. My daughter's rheumatologist can always tell if there is fluid in her knuckles just by examining them. She will point out two (for example) that are full of fluid and the others that are not. They all look the same to me!

Another thing you should not rule out is PsA. It can also affect all the joints you mentioned. It is seronegative and sometimes the joint disease shows up before the psoriasis.
04-15-2018, 11:56 PM   #13624
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Yes, I would just make sure to tell the new doc you are very sensitive to medications and muscle relaxants did not work. And be sure to tell her all the things you are doing - the stretching etc.

It may also take a while to diagnose you - it can take months in the rheumatology world. Some things are hard to diagnose - like connective tissue diseases or SLE.

RA should be faster because your joints will either be inflamed or not...it's fairly easy to tell with the hands. My daughter's rheumatologist can always tell if there is fluid in her knuckles just by examining them. She will point out two (for example) that are full of fluid and the others that are not. They all look the same to me!

Another thing you should not rule out is PsA. It can also affect all the joints you mentioned. It is seronegative and sometimes the joint disease shows up before the psoriasis.
I had not considered Psoriatic Arthritis - no one has mentioned it. Interesting symptoms, though. Tuesday can't come soon enough. Yes, it may take a while, but I'd be much happier knowing that I have more options available that were not addressed before.
04-16-2018, 12:31 AM   #13625
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The heels are commonly affected in PsA, as the are the hands. It can also affect the lower back (SI joints/lumbar spine) like SpA.

Good luck and let us know what happens.
04-16-2018, 07:41 AM   #13626
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Maya;

Thankfully the most recent swabs have come back clear so looks like the antibiotics did their job. Which means the current discharge must be my normal? It's like sticky and slightly green and dries crusty. It reminds me of snot lol. But I do have a terrible cold so maybe it will change soon. But the tract itself now looks really good the raw red weepy bit has healed up and it's all neat around the edges which is good.

Yeah I'm surprised I've been having trouble coming off the Tramadol at such a small dose but I'm now making it up in 10ml of water and weaning down 1ml every couple of days which seems to be going okay! I'm on 7ml now which is around 35mg.

Wow that's incredible she is doing so well with her gastroparesis! That must be amazing for her! I hope all goes well with her surgery. I have a feeling either later this year or early next year I will have to have another endometriosis surgery as I'm getting a lot of symptoms again so I can understand that stress.
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04-16-2018, 07:45 AM   #13627
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This is actually top of the list. If my scope shows the fundoplication is intact the gastric emptying test is next. You're all so smart here you figure out stuff way before my doctors do

Would explain why I feel full for literally a full day on one small meal in the morning. I still have an appetite to eat more later in the day, but feel very full all the time.
I'm glad you've already got a plan in pace to potentially check it out

Yes I started off like that just noticing I was feeling full quicker than usual and not having an appetite on a morning if I had a big meal the evening before or snacked late at night.

Also my experience of gastroparesis/delayed gastric emptying isn't everybody else's, a lot of people will just get a level of delay and stay there! So don't let that freak you out with the tube feeding and not eating stuff!
04-16-2018, 12:39 PM   #13628
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The heels are commonly affected in PsA, as the are the hands. It can also affect the lower back (SI joints/lumbar spine) like SpA.

Good luck and let us know what happens.
That's good to know.
04-17-2018, 01:33 PM   #13629
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Well, I had my appointment today and I think it went pretty good. The new rheumy is going to do more extensive blood work because my body is having mixed symptoms - some are fibromyalgia and some are osteoarthritis, but there is also swelling and redness now. My fingers, particularly, were painful upon physical exam. She did, however, confirm the diagnosis of fibromyalgia thru physical exam and said that the Effexor I'm on can help with that but there's nothing else she can do. As for the osteoarthritis, she didn't offer any potent NSAIDs and said, "Unfortunately, there is not much we can do for the pain. You will need to learn to accept it and make friends with it." Unfortunately, I disagree because there is other stuff out there, but she also said pain management may have other suggestions.

As for the bloodwork, she is testing for more specific antigens like HLA-B27 and inflammatory markers like CRP and ESR. She has also ordered x-rays of my hands and feet to see if inflammation shows up on them. Right now, according to her, I have 2 of 5 markers that she looks for in Rheumatoid Arthritis - family history and pain in extremities. If I show a third either thru bloodwork or x-rays or both, she said an option is prescribing methotrexate (she said I am not OK to take sulfasalazine since I am allergic to other sulfa drugs like Bactrim). If it is pretty bad, however, then we can talk about injectable drugs like Humira, Enbrel, Cimzia, etc. She really wants to have concrete evidence and explained the high risks that these drugs carry. She really wants to start with methotrexate since it's less risky and less expensive.

As for the fibromyalgia, I know there's not much to do about it so I'll do what I can but I really think that seeing a pain management specialist might be the best option. I see the new rheumy again in 3 weeks and, if the bloodwork does not show more evidence, then I will go specifically for osteoarthritis pain.

All in all, I'm glad I sought a second opinion but I'm kind of disappointed that no prescription NSAIDs were given as an option. She flat out said, without me saying anything, that she does not prescribe narcotics so I would definitely need to see pain management for that.

I did, however, find a big bottle of glucosamine, chondroitin, and vitamin D complex at Target on clearance (220 tablets for $18.54 and I take 2 daily) so I bought that and I hope that it helps. It's comparable to Osteo Bi-flex which I know is good for joint health, so I'm hoping it will help the pain and/or slow further destruction of my joints.
04-17-2018, 01:46 PM   #13630
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Generally, MTX is prescribed first for RA. It works very well for the peripheral joints and doesn't come with too many risks. It is used even in toddlers with JIA. My girls had less side effects with injectable MTX, but some prefer the pills. We did the shot on a Friday/Saturday so if they had side effects, they could recover over the weekend.

I am very surprised she didn't offer an NSAID - did you ask for one? That would really help with the osteoarthritis pain and with any pain actually. If you do have RA, then it would help with that. It might help with the fibro pain too.

I'd just call her office or write her an email and ask if you could try a prescription NSAID. It's not like asking for a narcotic - it's not considered "bad" or "drug seeking." Just say OTC NSAIDs have been bothering your stomach and ask if there is another NSAID you could take that would be easier on your stomach. This is not an uncommon problem.

Pain management can do things like injections for your neck and PT can work on the muscles. It is likely that if you have neck pain, you're unconsciously tensing up your muscles which causes more pain. One of my daughters had that issue and she had trigger point injections in her trapezius muscles which REALLY helped. So I would pursue both things for your neck. I'd probably start with PT first since that is less invasive than doing any kind of injections.

As for your hands, I think once you have the x-rays done and blood work done, you should finally have some answers. It is true that you need concrete evidence of arthritis before you can go to a biologic - otherwise the risks outweigh the benefits (and insurance probably wouldn't approve it anyway without concrete evidence).

Good luck - I hope the x-rays give and blood work finally give you some answers.
04-17-2018, 04:36 PM   #13631
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Generally, MTX is prescribed first for RA. It works very well for the peripheral joints and doesn't come with too many risks. It is used even in toddlers with JIA. My girls had less side effects with injectable MTX, but some prefer the pills. We did the shot on a Friday/Saturday so if they had side effects, they could recover over the weekend.

I am very surprised she didn't offer an NSAID - did you ask for one? That would really help with the osteoarthritis pain and with any pain actually. If you do have RA, then it would help with that. It might help with the fibro pain too.

I'd just call her office or write her an email and ask if you could try a prescription NSAID. It's not like asking for a narcotic - it's not considered "bad" or "drug seeking." Just say OTC NSAIDs have been bothering your stomach and ask if there is another NSAID you could take that would be easier on your stomach. This is not an uncommon problem.

Pain management can do things like injections for your neck and PT can work on the muscles. It is likely that if you have neck pain, you're unconsciously tensing up your muscles which causes more pain. One of my daughters had that issue and she had trigger point injections in her trapezius muscles which REALLY helped. So I would pursue both things for your neck. I'd probably start with PT first since that is less invasive than doing any kind of injections.

As for your hands, I think once you have the x-rays done and blood work done, you should finally have some answers. It is true that you need concrete evidence of arthritis before you can go to a biologic - otherwise the risks outweigh the benefits (and insurance probably wouldn't approve it anyway without concrete evidence).

Good luck - I hope the x-rays give and blood work finally give you some answers.
It was very weird. When I noticed she was concluding the appointment without talking about prescription NSAIDs, I did bring up that I was curious if there was anything that I could take that was better for my osteoarthritis. I told her I was eating Advil like crazy and that's when she mentioned, again, that I should become more used to the pain and basically learn to live with it. She mentioned that she does not prescribe narcotics (I absolutely did NOT bring that up this visit) and there was not much else. It left me very confused and disappointed.

I'm beginning to wonder why the doctors in this practice aren't interested in prescribing stronger NSAIDs. I don't know if will do any good to bring in research from the internet and see what she says about Mobic or another NSAID. About the only thing I can do beyond asking her again is contact my primary doctor and see if she would prescribe anything but I don't know if she will since she referred me to rheumatology.

ETA: I just sent a message thru the portal since it's after hours and mentioned that I went online to read about osteoarthritis and saw that there were other NSAIDs mentioned that were better for OA and asked if I could try one to see if it helps me better than Advil. If she doesn't prescribe one, I'll contact my primary and see if she could help me.
04-17-2018, 04:55 PM   #13632
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Mobic isn't really "stronger" - it's just different. It might be easier on your stomach. It is true that the anti-inflammatory doses rheumatologists give are different from the OTC ones (for example, when my girls were prescribed Naproxen, which is Aleve, their rheumatologist prescribed more than is recommended on the OTC bottle for their ages), but it's not like she's giving you some extra powerful drug.

It is bizarre...it sounds like she is a good rheumatologist. Everything else you have said sounds very normal for the rheumatology world (and believe me, between my two daughters and husband, we have seen about 20 rheumatologists, both adult and pediatric). But NSAIDs are usually first line. Maybe she assumed you wanted to stay on Advil?

If it was my kiddo, I would write an email saying Advil is bothering my stomach and you were wondering if you could try another NSAID. That's as simple as it should be...it's not like you're asking to try something like an anti-TNF which requires concrete proof of inflammatory arthritis...an NSAID is justified for OA, for Fibromyalgia and even just for joint pain. And it is DEFINITELY usually a first line drug in suspected RA/SpA/JIA etc.

The commonly prescribed NSAIDs for kids are Mobic, Naproxen, Celebrex, Voltaren. Relafen is probably prescribed less but worked very well for both my girls.

Honestly, your PCP could prescribe one, but it would be odd since that is now your rheumatologist's domain. I think the best way to deal with this is to just ask her. She must have just misunderstood and maybe she thought you were saying you could not tolerate NSAIDs and didn't want one and wanted something else (which may be why she brought up narcotics). That's all I can think of.
04-17-2018, 04:57 PM   #13633
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I just saw what you added. In response to that, I want to say that you should probably get your x-rays done as soon as you can, as well as your blood work. Just because the doses of NSAIDs used for RA may differ from those used for OA (generally they would be higher). So it would be good for her to know if you have it.
04-17-2018, 05:19 PM   #13634
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I just saw what you added. In response to that, I want to say that you should probably get your x-rays done as soon as you can, as well as your blood work. Just because the doses of NSAIDs used for RA may differ from those used for OA (generally they would be higher). So it would be good for her to know if you have it.
I think you're right about her thinking that I wanted something other than an NSAID when I mentioned it. I told her that I was eating Advil and was wondering if there was something better to take and I think maybe it was too open ended and made her think narcotics straight away. Honestly, though, she's the doctor and if she knows that there is something other than narcotics that would be safer, why not present that as an option?

Honestly, I'm just very frustrated. I know it's my responsibility to do all I can as far as healthy diet, exercise, and getting enough sleep and to be my own advocate, but I wonder why these two doctors seem to think that is enough? Yes, I know it can help, but it's not going to take the pain away completely - both of them even said that. I think it would be beneficial to at least try something that would improve my quality of life beyond what I have now.

It doesn't help that I'm getting push-back from my own mother. She seems to think that I just want a pill to take everything away but I said it's unreasonable to think that it will. I am willing to do the work but what is wrong with a little help along the way?
04-17-2018, 05:37 PM   #13635
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You have to remember that these doctors are very rushed. They are trying to deal with getting everything into the computer as well as fit in as many patients as possible, as well as dealing with insurance companies who make their lives hell when they are appealing for biologics etc.

My daughter is extremely complicated - she has AS, Crohn's, Gastroparesis and many other conditions. She is on 20 medications and sees about 16 specialists. One of the things we do is that we go in with a typed update of how she is doing in each area - in her case, that means how her GI stuff is, how her AS symptoms are (both inflammatory and damage), chronic pain symptoms, endocrinology symptoms and so on. We include medication changes and basically just cover what has happened in the last 3 months in a 2-3 bullet points under each category (GI, rheumatology, pain management, endocrinology, hip orthopedic surgeon, oral and maxillofacial surgeon, PT and so on).

We also provide her with a list of medications. They are in the system of course, but it's simpler for her to have a typed list to refer to since M has so many.

Lastly, we give her a typed list of questions and concerns we want addressed. We make them as specific as possible. For example, one of yours could be "Can I try a different NSAID to see if it is easier on my stomach?" One of hers a couple months ago was "Can I try a different DMARD to see if it helps my hands and feet?" or "Can I have SI joint injections since it has been 4 months since the last set?"

We make it as specific as possible and try not to ask more than 3-4 things. M's appointments always take more than an hour and we feel bad for taking up the doctor's time, but she is extra complex.

When things are bad, we see the doctor more frequently - like every 2 months. When things are good, we see her every 3-4 months.

I would try writing down your questions VERY clearly in advance so things are not left open to interpretation. And don't get stuck on expecting one answer - if you ask for another NSAID because Advil is bothering your stomach, and she suggests taking Zantac with it first, then try that. If that doesn't work, then move on. You won't always get the answer you expect but if your question is specific enough, you should get a good answer.

And ignore your mother. All the conditions you have cause pain. If you have RA, that can cause significant damage and impact your organs. You absolutely have to treat it.

There are some people who just don't get it. I would try to educate her on the diagnoses you have currently and if that does not work, just move on and every time she says something, just say "I am doing what the doctor ordered." It is very hard to argue with that.
04-17-2018, 05:52 PM   #13636
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You have to remember that these doctors are very rushed. They are trying to deal with getting everything into the computer as well as fit in as many patients as possible, as well as dealing with insurance companies who make their lives hell when they are appealing for biologics etc.

My daughter is extremely complicated - she has AS, Crohn's, Gastroparesis and many other conditions. She is on 20 medications and sees about 16 specialists. One of the things we do is that we go in with a typed update of how she is doing in each area - in her case, that means how her GI stuff is, how her AS symptoms are (both inflammatory and damage), chronic pain symptoms, endocrinology symptoms and so on. We include medication changes and basically just cover what has happened in the last 3 months in a 2-3 bullet points under each category (GI, rheumatology, pain management, endocrinology, hip orthopedic surgeon, oral and maxillofacial surgeon, PT and so on).

We also provide her with a list of medications. They are in the system of course, but it's simpler for her to have a typed list to refer to since M has so many.

Lastly, we give her a typed list of questions and concerns we want addressed. We make them as specific as possible. For example, one of yours could be "Can I try a different NSAID to see if it is easier on my stomach?" One of hers a couple months ago was "Can I try a different DMARD to see if it helps my hands and feet?" or "Can I have SI joint injections since it has been 4 months since the last set?"

We make it as specific as possible and try not to ask more than 3-4 things. M's appointments always take more than an hour and we feel bad for taking up the doctor's time, but she is extra complex.

When things are bad, we see the doctor more frequently - like every 2 months. When things are good, we see her every 3-4 months.

I would try writing down your questions VERY clearly in advance so things are not left open to interpretation. And don't get stuck on expecting one answer - if you ask for another NSAID because Advil is bothering your stomach, and she suggests taking Zantac with it first, then try that. If that doesn't work, then move on. You won't always get the answer you expect but if your question is specific enough, you should get a good answer.

And ignore your mother. All the conditions you have cause pain. If you have RA, that can cause significant damage and impact your organs. You absolutely have to treat it.

There are some people who just don't get it. I would try to educate her on the diagnoses you have currently and if that does not work, just move on and every time she says something, just say "I am doing what the doctor ordered." It is very hard to argue with that.
I absolutely appreciate your help. Everything you said makes sense and I will definitely try your suggestions. I never thought about bringing in a list of questions for the doctor - I will try that and see what happens. If I don't hear back about the portal message I sent within a day or two, I'll call the office and ask again. I am also going to call the imaging center and get an appointment there to get the x-rays done. I was planning to call today but by the time I got home, I was so sore and tired that I had to rest.

Anyway, I'm supposed to see my grandmother this week and that always cheers me up so I'm looking forward to that. I'm also moving in the right direction regarding jobs because I'm getting callbacks for interviews! Yay!

Last edited by MissLeopard83; 04-17-2018 at 09:34 PM.
04-18-2018, 03:44 PM   #13637
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I got some really good news today. I emailed the rheumy last night and she replied today and said that she called Mobic in to the pharmacy. I picked it up on my way home from my grandmother's house and it's 7.5mg to be taken twice daily as needed. She redeemed herself in my book and I'm very grateful she took it into consideration. She said if the Mobic (aka Meloxicam) doesn't work or has side effects for me that the next step is Voltaren (aka Diclofenac).
04-18-2018, 03:46 PM   #13638
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That's wonderful - that is the usual dose (it can be taken once daily but we have found it's really needed twice daily). Make sure to take it after food so it does not bother your stomach. Good luck!
04-18-2018, 04:07 PM   #13639
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That's wonderful - that is the usual dose (it can be taken once daily but we have found it's really needed twice daily). Make sure to take it after food so it does not bother your stomach. Good luck!
I was honestly quite shocked and didn't think she'd do anything, at least until we got the lab results and x-rays back.
04-18-2018, 06:54 PM   #13640
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I was honestly quite shocked and didn't think she'd do anything, at least until we got the lab results and x-rays back.
That's great that you are getting somewhere with your new choice in doctors, MissLeopard. I hope you get some pain relief.

Maya, wow! You truly care about your family, that's plain to see. Your knowledge of these conditions is absolutely incredible, you must be a great mom to have.
04-18-2018, 06:55 PM   #13641
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MissLeopard - It sounds like youíre moving in the right direction! Iím so glad your new rheumatologist was responsive and you get to try the new prescription. I agree that some people just donít get it. And it can be SO frustrating! I hope you get an appointment for your X-rays soon, so maybe you can get some more answers. And yay for getting called for interviews! I swear sometimes thatís the hardest part of getting a new job - just getting them to give you a dang interview. Keep us posted!

Maya - Can you come be my mom and come to appointments with me?! You seem so great and knowledgeable and like such a great advocate. Maybe you should become a doctor.....

I hope everyone is doing as well as possible! Iím so glad that itís finally spring. Most of the snow around me has melted - yay! I know there are a ton of places having crazy and cold weather right now. I used to hate living in such a cold place, but maybe itís not actually as bad as I thought.....itís warmer here than in a lot of other places right now.
04-18-2018, 06:57 PM   #13642
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Cmack - We basically just said the same things at the same time. I just rambled a bit more. Haha!
04-18-2018, 07:01 PM   #13643
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Were you reading my mind or something? ROTFL
04-18-2018, 07:06 PM   #13644
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Or were you reading mine?!
04-18-2018, 07:15 PM   #13645
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MissLeopard - It sounds like youíre moving in the right direction! Iím so glad your new rheumatologist was responsive and you get to try the new prescription. I agree that some people just donít get it. And it can be SO frustrating! I hope you get an appointment for your X-rays soon, so maybe you can get some more answers. And yay for getting called for interviews! I swear sometimes thatís the hardest part of getting a new job - just getting them to give you a dang interview. Keep us posted!

Maya - Can you come be my mom and come to appointments with me?! You seem so great and knowledgeable and like such a great advocate. Maybe you should become a doctor.....

I hope everyone is doing as well as possible! Iím so glad that itís finally spring. Most of the snow around me has melted - yay! I know there are a ton of places having crazy and cold weather right now. I used to hate living in such a cold place, but maybe itís not actually as bad as I thought.....itís warmer here than in a lot of other places right now.
My x-rays are scheduled tomorrow at 2pm. I have my lab work scheduled on Saturday at 10:45am.
04-18-2018, 07:35 PM   #13646
Maya142
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Funnily enough, this is a system my daughter came up with as a teenager. I can't even take credit for it . But I have taught her to research her diseases so that she is well-informed and to think about what the main issues are before the appointment. We talk about them the night before the appt. and on the drive there. I still accompany her to almost all appointments, mostly because she is so complex that I feel like a second set of ears helps and it ALWAYS helps to have someone else to help you advocate for yourself.

Plus the only issues I know a LOT about are rheumatic ones...my husband and both daughters have inflammatory arthritis (AS). I have picked up a lot over the years because I've had to. My girls are pretty good, but my husband is a nightmare patient. Even getting him to see a doctor, despite having very severe AS, has been really difficult!!

Good luck tomorrow MissLeopard83. Hopefully you will finally have some answers soon.

I hope the rest of you are all hanging in there.
04-22-2018, 03:34 PM   #13647
MissLeopard83
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I'm noticing improvement with the meloxicam (Mobic). My neck doesn't sound nearly as "crunchy" or make that weird grinding sound. It kept doing it because I have prominent facet joint arthritis in my neck between C4 and C5. I read online that it can take about 2 weeks to fully get in your system for maximum benefit, but it's good to know that it's showing some improvement already. I really hope it works out because I also saw a study that showed Mobic has much less gastrointestinal symptoms than Diclofenac.

https://jamanetwork.com/journals/jam...article/485487

As for the lab work and x-rays, I have not been able to get them done yet. I've had things come up both days that they were scheduled. I have time, though, as the new rheumy said to do it in 3 weeks before I see her again. I've made another appointment for the lab work and may just do a walk-in for the x-rays as the imaging center usually doesn't have very many patients during the weekday if you go mid-day.
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