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10-05-2018, 07:58 PM   #13771
MissLeopard83
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MissLeopard83, I would most definitely not take prednisone from a podiatrist. If you think you need it, discuss options with your rheumatologist.

I would also ask the rheumatologist to take a look at your ankle x-rays and/or get them evaluated by a radiologist.

I would also make sure you have evidence of inflammation (on ultrasound or MRI) before you escalate therapies for mixed connective tissue disease. Since you have osteoarthritis elsewhere, hand osteoarthritis is a possibility. Or it could be fibromyalgia pain and stiffness (fibromyalgia can and very often does cause stiffness). Since you have 3 medical conditions that could all cause hand pain, you don't want to go in the wrong direction so you have to examine all the possibilities.
I just have had horrible experience with prednisone in the past for asthma related issues.

When I had the hand x-rays a few months ago, there was no arthritis - osteo or otherwise - visible. It's been pretty constant and has been there for about a month. I took a picture of it when I first noticed in on Sept. 7th so I could show the rheumatologist when saw her again this month. Neither Tylenol or Advil helps it. I had to stop the Diclofenac as it made my blood pressure worse.

I see the podiatrist again on next Friday so I'll ask for a copy of the x-rays to bring with me to the rheumy. I also had blood work drawn yesterday which included a CBC, CMP, and sed rate that she requested I complete before my next rheumy appointment. The fibromyalgia has been pretty well controlled thanks to an antidepressant I'm on, so I'm pretty sure it's not related.

I'll keep you guys posted!
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10-16-2018, 05:38 PM   #13772
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nvrmind!
10-17-2018, 07:29 AM   #13773
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Did you get to see the new rheumatologist MissLeopard83? How did it go? Hope your hands are feeling better now.

I can't remember which state you're in but it's starting to get colder here (it's around 55 degrees F), and my younger daughter has been complaining about very stiff and painful fingers, wrists and elbows. It makes even typing hard .

I hope the new rheum has some good ideas for your hands!!
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10-27-2018, 08:31 PM   #13774
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Did you get to see the new rheumatologist MissLeopard83? How did it go? Hope your hands are feeling better now.

I can't remember which state you're in but it's starting to get colder here (it's around 55 degrees F), and my younger daughter has been complaining about very stiff and painful fingers, wrists and elbows. It makes even typing hard .

I hope the new rheum has some good ideas for your hands!!
Hi Maya!

I see my PCP on Tuesday so I will ask for the referral then. I thinking about seeing the rheumy that shares her practice or another one down the street from me.

As for my current rheumatologist, I saw her again on the 16th and told her about my hands swelling. She did a physical exam, saw where it was but only told me that my tendons were in "great alignment." She never told me what the swelling could be. My mom thinks it might be a ganglion cyst but it formed in between my first and second finger on my left hand on the top part, below my fingers and in between the knuckles. It's kind of squishy, not hard like a cyst. I felt so irritated with the doctor. She also pushed MTX on me and only gave me an option between that and Imuran - two very toxic drugs. I had researched before our appointment and found that there were other, safer options, and MTX and Imuran are usually not second line treatments due to toxicity and risk of lymphoma.

Also, I found out that the Plaquenil I've been taking for several months now has sulfa in it when I clearly stated I have a sulfa allergy! I found out because I asked her if the Plaquenil could cause the mysterious itchy rashes I've been finding randomly and that's when she told me. I was livid! That's the second time I've been prescribed a sulfa drug by this practice - the Plaquenil was prescribed by the first rheumy I saw and then Celebrex was prescribed by the current one. I don't think they really look at drug allergies as I told them it causes rashes when I take sulfa drugs and also affects my asthma (which has also been flaring). She told me I could cut the dose to 1 pill per day but I don't want to take it at all. These rashes are huge and last for several weeks before disappearing.

Now, I'm basically stuck with MTX until I can see a new rheumy or take nothing at all. The current rheumy gave me a script for injectable MTX since I was having pretty bad nausea with the oral kind. I am supposed to take it every Wednesday since that is the day I started. Next week is supposed to be the first time I inject it but I'm scared. The nausea has been horrible and I keep having to use Zofran to get it under control. My hair is thinning again, too, but I don't know if that's MTX (only been on it 2 weeks) or another med.

Please say some prayers that I can get in with a new rheumy. I want someone else who is unbiased and can give me some safer, less toxic options. I know there are a few out there that are better for lupus but MTX doesn't seem to be one of them since it's mainly for RA according to patient reviews.
10-29-2018, 02:12 PM   #13775
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MTX is used for SLE sometimes. You don't have a formal SLE diagnosis yet, right? You're currently dxed with MCTD (Mixed Connective Tissue Disease), right? That may be why the rheumatologist is unwilling to use anything else.

Though frankly, I don't know what safer options would be - MTX is pretty safe. It can be hard to take due to side effects, but it certainly is safer than Imuran. What other options did you read about?

I would certainly stop Plaquenil if you're allergic to it - I can't believe she missed that and is now telling you to continue with it? Does she think it's a side effect or an actual allergy? Because if the rashes are a side effect, they may be annoying but the med would be safe to take.

If it's an actual drug allergy, the medication should be stopped because your allergic reaction may be an itchy rash now, but it could at any point become worse and you don't want to go into anaphylaxis. At least, that is my understanding of drug allergies.

I wasn't aware Plaquenil was a sulfa drug - are you sure it is? It is not listed in any of the lists of sulfa drugs that I have seen. So I looked it up and I found that it is NOT a sulfa drug. Sulfa is not the same as Sulfites or Sulfates. Plaquenil is Hydroxychloroquine sulfate.

It does cause rashes, but in one of studies done, people with SLE who had sulfa allergies did not develop side effects.

That may be why your rheumatologist did not take you off Plaquenil immediately.

Here is some info: https://www.healthline.com/health/al...#sulfa-allergy

Here is one study: https://jamanetwork.com/journals/jam...article/478952

It is fairly common to need Zofran with MTX. We were told to give it half an hour before MTX and to give MTX right before bed, so my daughters could sleep through the worst of the side effects. Then we gave Zofran again the next day.

Are you on folic acid with the MTX? If not, you absolutely have to be. If you are, how much? You may need a higher dose to prevent side effects.

For hair thinning (again, another common side effect of MTX), upping folic acid might help. You could also try Leucovorin which is folinic acid.

Biotin also helps with hair thinning and is OTC. Check with your doctor of course, but I would guess you'll be allowed to try it. Both my girls took it with MTX.

I will write more later - have to run.
10-30-2018, 04:26 AM   #13776
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MTX is used for SLE sometimes. You don't have a formal SLE diagnosis yet, right? You're currently dxed with MCTD (Mixed Connective Tissue Disease), right? That may be why the rheumatologist is unwilling to use anything else.

I actually have a diagnosis of Undifferentiated Connective Tissue Disease but meet at least 4 of the 11 criteria specified for SLE - photosensitivity, positive ANA, butterfly rash, arthritis, and anemia.

Though frankly, I don't know what safer options would be - MTX is pretty safe. It can be hard to take due to side effects, but it certainly is safer than Imuran. What other options did you read about?

I was focusing on meds that didn't cause a risk of lymphoma. There's a few out there, but I don't know if they are available to me. I still need to do some research.

I would certainly stop Plaquenil if you're allergic to it - I can't believe she missed that and is now telling you to continue with it? Does she think it's a side effect or an actual allergy? Because if the rashes are a side effect, they may be annoying but the med would be safe to take.

If it's an actual drug allergy, the medication should be stopped because your allergic reaction may be an itchy rash now, but it could at any point become worse and you don't want to go into anaphylaxis. At least, that is my understanding of drug allergies.

When I asked her if the Plaquenil could be causing the rashes, she said it might be an allergy. She originally had me on a dose of 1.5 pills (300mg) and lowered it to 1 pill (200mg). The rashes persisted even after the lower dose. Once I stopped, they started disappearing.

I wasn't aware Plaquenil was a sulfa drug - are you sure it is? It is not listed in any of the lists of sulfa drugs that I have seen. So I looked it up and I found that it is NOT a sulfa drug. Sulfa is not the same as Sulfites or Sulfates. Plaquenil is Hydroxychloroquine sulfate.

It does cause rashes, but in one of studies done, people with SLE who had sulfa allergies did not develop side effects.

That may be why your rheumatologist did not take you off Plaquenil immediately.

That's what the rheumatologist told me. However, when I looked it up last night, it's much more likely that I have either an allergy or sensitivity to quinine. My aunt cannot take it, either, due to an allergy.

Here is some info: https://www.healthline.com/health/al...#sulfa-allergy

Here is one study: https://jamanetwork.com/journals/jam...article/478952

It is fairly common to need Zofran with MTX. We were told to give it half an hour before MTX and to give MTX right before bed, so my daughters could sleep through the worst of the side effects. Then we gave Zofran again the next day.

Are you on folic acid with the MTX? If not, you absolutely have to be. If you are, how much? You may need a higher dose to prevent side effects.

For hair thinning (again, another common side effect of MTX), upping folic acid might help. You could also try Leucovorin which is folinic acid.

I'm on 1mg of folic acid as prescribed. That's what she gave me at our last appointment.

Biotin also helps with hair thinning and is OTC. Check with your doctor of course, but I would guess you'll be allowed to try it. Both my girls took it with MTX.

I will write more later - have to run.

Unfortunately, biotin interacts with thyroid meds for hypothyroidism. My pharmacist told me to avoid it.
See my replies in above.

ETA: One thing that the rheumatologist and I discussed at my last appointment is the use of corticosteroids. At the time, I was against them because I've used them in the past for asthma and bronchitis and they always make me feel horrible - ravenous appetite, mood swings, fatigue, etc. However, I think I'd rather give them a try and see if it brings down the swelling before going to MTX, Imuran, or other immunosuppressants.

I'm going to ask my PCD today if she could prescribe a short regimen since she is closer to my house than the current rheumy is and I could see her much more easily since she's in-office more often (the rheumy does most of her practice about 30 miles away from me and I only see her on Tuesdays when she is in her other practice).

Last edited by MissLeopard83; 10-30-2018 at 09:19 AM.
10-30-2018, 09:31 AM   #13777
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I looked up the difference between UCTD and MCTD and this is what I found.

When these conditions have not developed the classic features of a particular disease, doctors will often refer to the condition as "undifferentiated connective tissue disease" or UCTD. This designation implies that the characteristic features that are used to define the classic connective tissue diseases are not present but that some symptoms or signs of a connective tissue disease exist. For example, a person may have a special antibody in the blood, such as antinuclear antibody, along with muscle pains, but no other definable features of a classic connective tissue disease. Individuals with undifferentiated connective tissue disease may never develop a fully definable condition or they may eventually develop a classic connective tissue disease.

Mixed connective tissue disease (MCTD), which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.
Based on my research, Plaquenil is not a sulfa drug. It has Sulfate in it but that's different from sulfa. It certainly could be the quinine that you're reacting to.

I definitely understand that you are frustrated with your rheumatologist. Honestly, I don't think she's giving you good information. If she thinks you're allergic to Plaquenil, she should have stopped it immediately.

Is there any way you can see a rheumatologist in a university/teaching hospital?

If you're taking 1 mg of folic acid, you can definitely go up - we upped it to 2 mg daily for my daughter. It did help with side effects - even with hair thinning.

Leucovorin is another option - it's folinic acid and is used as a rescue drug when MTX is given in very high doses (like 1000 mg) for cancer.

A much lower dose of Leucovorin is given 12 or 24 hours after you take MTX. It helps with the side effects. Doctors do not like to use it though unless you are on a high dose because it does make MTX a little less effective.

I can't think of any medications used for Undifferentiated Connective Tissue Disease or MCTD that are safer than MTX. I looked it up and found that NSAIDs, MTX and Imuran were used for UCTD.

What were the meds that you were thinking about?

Imuran is definitely riskier than MTX in terms of the Lymphoma risk, as well as non-melanoma skin cancer. I worried a lot more when my kiddo was on Imuran vs. MTX. She also got MANY infections on Imuran.
10-30-2018, 09:57 PM   #13778
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I looked up the difference between UCTD and MCTD and this is what I found.

Yep, I had to do the same research because I had never heard of UCTD. It's kind of ambiguous, really, in that it's more of a guessing game for doctors on which treatments will help your symptoms.

Based on my research, Plaquenil is not a sulfa drug. It has Sulfate in it but that's different from sulfa. It certainly could be the quinine that you're reacting to.

The fact that my current rheumy thought it was a sulfa drug just makes me want to switch even more. I don't know where she got that idea from, but I didn't find anything, either, that said Plaquenil was a sulfa drug.
People do, however, have reactions to quinine.


I definitely understand that you are frustrated with your rheumatologist. Honestly, I don't think she's giving you good information. If she thinks you're allergic to Plaquenil, she should have stopped it immediately.

Honestly, I'm fed up. The whole time, I felt like she was giving me things to shut me up rather than because I really need them. I felt like I was wasting her time, which is not a good feeling. I don't really trust her.

Is there any way you can see a rheumatologist in a university/teaching hospital?

I have HMO insurance so I'm rather limited in who I can see. The rheumatologists that are in my network are connected to faith-based hospitals, mostly, with a handful being at the local university clinic. They do NOT have good reviews.

However, when I met with my primary doctor today, she and I discussed me switching to the rheumy in the same office. She gave me a referral and I was able to schedule an appointment with the new one on Nov. 28th. She also had me sign a release form so that the office could have the information from my current rheumy sent over before my appointment. I love this doctor! She is really on-the-ball!


If you're taking 1 mg of folic acid, you can definitely go up - we upped it to 2 mg daily for my daughter. It did help with side effects - even with hair thinning.

Leucovorin is another option - it's folinic acid and is used as a rescue drug when MTX is given in very high doses (like 1000 mg) for cancer.

A much lower dose of Leucovorin is given 12 or 24 hours after you take MTX. It helps with the side effects. Doctors do not like to use it though unless you are on a high dose because it does make MTX a little less effective.

If the hair thinning continues, I will definitely talk to the new rheumy next month about it.

I can't think of any medications used for Undifferentiated Connective Tissue Disease or MCTD that are safer than MTX. I looked it up and found that NSAIDs, MTX and Imuran were used for UCTD.

What were the meds that you were thinking about?

Since there are no meds specifically for UCTD, it was a little bit of a test to try to find medications that might be an option. Plaquenil kept coming up multiple times. However, I found that Anakinra/Kineret had relatively low side effects listed, which is surprising because it is a biologic drug but works differently than most. It's mainly used for RA but can be used for other autoimmune disorders. Every single website that I looked at had information that was much less worrying to me than MTX. Of course, it's something I'll have to make sure of.

I'm still researching other medications. Benlysta came up several times because it's specific for lupus, but it's very new, very expensive, and very risky. That one is not something I'm very interested in.


Imuran is definitely riskier than MTX in terms of the Lymphoma risk, as well as non-melanoma skin cancer. I worried a lot more when my kiddo was on Imuran vs. MTX. She also got MANY infections on Imuran.

I about did a jaw drop when I saw how many horrendous side effects were associated with Imuran! What a scary medication!
Hi Maya,

Please see my replies above. To add, I am really hoping this new rheumy does more imaging. I've only had x-rays and I really think it would be a good idea to get an MRI to look for swelling and other things not visible on x-ray. Tomorrow is my dose date for MTX but I'm seriously considering holding off until I see this new rheumy for a 2nd opinion in a month.

ETA: Kineret is actually VERY expensive, even with insurance. Yikes!
10-31-2018, 04:00 AM   #13779
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I have honestly NEVER heard of Kineret being used for UCTD. But also no insurance company is going to allow you to jump to a biologic. They now require you to try other therapies first - things like MTX, Imuran, Cellcept.

Kineret is used for 3 conditions - Systemic JIA, Still's Disease and Periodic fever syndromes (autoinflammatory and very, very rare) and RA.

It is much safer to keep you on something like MTX or Plaquenil till they know which diagnosis the patient has. UCTD is so broad that doctors often wait to see clear symptoms of SLE, Scleroderma, Dermatomyositis, Sjogren's etc.

Then if they determine that you have many symptoms that match those of SLE, for example, then they'll treat you for that. The treatment usually starts with MTX/Imuran and Plaquenil. Cytoxan is also used a lot. So is Cellcept. Then if all that fails, they go to biologics - Benlysta is used often.

I've never heard of Kineret being used for UCTD - did you find it in a case study? It's definitely used for RA, but not as a first line treatment usually. Generally anti-TNFs or Actemra are used first for RA.
11-01-2018, 02:21 PM   #13780
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I have honestly NEVER heard of Kineret being used for UCTD. But also no insurance company is going to allow you to jump to a biologic. They now require you to try other therapies first - things like MTX, Imuran, Cellcept.

Kineret is used for 3 conditions - Systemic JIA, Still's Disease and Periodic fever syndromes (autoinflammatory and very, very rare) and RA.

It is much safer to keep you on something like MTX or Plaquenil till they know which diagnosis the patient has. UCTD is so broad that doctors often wait to see clear symptoms of SLE, Scleroderma, Dermatomyositis, Sjogren's etc.

Then if they determine that you have many symptoms that match those of SLE, for example, then they'll treat you for that. The treatment usually starts with MTX/Imuran and Plaquenil. Cytoxan is also used a lot. So is Cellcept. Then if all that fails, they go to biologics - Benlysta is used often.

I've never heard of Kineret being used for UCTD - did you find it in a case study? It's definitely used for RA, but not as a first line treatment usually. Generally anti-TNFs or Actemra are used first for RA.
I'll have to wait and see what this new rheumy says later this month. It will be interesting to see if she sticks with UCTD like the other two did (they were in the same practice) or she moves to a solid diagnosis. I'm going to make a list of all the symptoms I've experienced - both previous and current - to show her when I see her on the 28th.

As for the methotrexate, I decided to do the first injection because my joints were really bothering me. I was scared, at first, to do it because I've never been shown so I had to figure things out for myself. The scariest part was how much methotrexate I needed to draw up into the syringe.

I was prescribed insulin needles and they measure in units, not mL. However, I realized there was 1mL listed at 100 units so I drew up 40 units of methotrexate into the syringe which equaled 0.4mL (my prescribed dose). I then had to find the right pressure to get the needle thru the skin. I've heard that the best place to inject MTX is the top of the thigh, but my skin there is kind of tough to pierce thru. I finally managed to do it, though, and SLOWLY injected the MTX. It didn't hurt at all going in - just a little bit sore.

I'm happy to say that there has been NO nausea! I've been able to eat normally and haven't used any Zofran, which is amazing! I am, however, in the midst of a fibromyalgia flare due to the changing weather, but that's normal. It's nothing I can't push thru!
11-07-2018, 08:22 PM   #13781
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After doing some research on how to stop autoimmune disease without the use of immunosuppressants, I decided to adopt a plant-based diet. I read tons of success stories, including the "Forks Over Knives" website, and several people there have stopped their autoimmune disease (RA, lupus, MS, etc) with a whole-food, plant-based diet. I figured I didn't have anything to lose so I went to the store yesterday and got tons of organic veggies, fruits, and good quality meat substitutes (Amy's Kitchen is my fave). I toyed with the idea for about a week and then decided it was worth it so today was my first day and I cut out diet soda, too, and am sticking with green tea or water (including sparkling). My joint pain is already reduced (though I'm not noticing much difference in my fibromyalgia) but I know it will take some time to see a big difference.

I see my new rheumatologist on the 28th this month so I hope I have some positive news by then! Maybe I won't have to be on methotrexate! That would be awesome!
11-08-2018, 11:47 AM   #13782
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I hope the diet helps!

The good part about MTX is that it can be started and stopped easily - unlike biologics. So you could do a trial without MTX and if it doesn't work, just re-start MTX.
11-09-2018, 08:20 PM   #13783
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I wish you the best, MissLeopard.
11-13-2018, 01:07 PM   #13784
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Thank you for your support! Even though it's only been a week, I feel better! My joints don't hurt as much, I'm taking less pain relievers, my energy is higher, etc. Even the swelling in my hands has gone down! Tomorrow is my usual day of MTX but I'm skipping it! It made me feel like crap last week for several days and I just don't see that as a viable option. If a diet can make me feel good without drugs, then it's worth it!
11-13-2018, 01:19 PM   #13785
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I would check with your rheumatologist before stopping anything. MTX may make you feel crummy but it is generally given for a reason - to prevent joint damage and to control inflammation. It can also prevent disease progression.

Your case is a bit "fuzzy" considering you have UCTD and no firmer diagnosis that absolutely needs treatment to prevent progression - such as in RA or Lupus.

With UCTD, you may be able to get away with using diet. But remember that diet has not been proven to reduce joint damage or prevent disease progression. You could go off MTX and end up with full-blown RA or SLE.

So I would just consult your rheumatologist. I know you are going to see a new one but until you have established care there, you should ask your current rheumatologist. There are things you can do to deal with MTX side effects.

Additionally, I know you have moved from rheumatologist to rheumatologist. I'm sure it has been for good reasons, but that reality is that doctors view "doctor hopping" as sort of suspicious. So I would be cautious about changing doctors too much.
11-13-2018, 07:06 PM   #13786
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I'm not so sure that you should stop MTX either. Honestly, I care about you, and I really think you should speak with the doctor first. xx
11-18-2018, 04:52 AM   #13787
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It's funny you both should mention staying on it because I actually think it was helping my joint pain. I was off it for about 3-4 days and noticed my pain flared quite a bit due to the cold weather. I decided to move my injection day. I was doing it on Wednesdays but I think I'll be doing it on Sunday now. It's just better because I'm able to enjoy the weekend before doing the injection and having the hangover feeling for a few days.
11-18-2018, 11:21 AM   #13788
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That sounds like it might be an idea, you may actually enjoy your time off more.
11-19-2018, 04:45 PM   #13789
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That sounds like it might be an idea, you may actually enjoy your time off more.
I did the injection yesterday morning and had body pain and a migraine for the better part of the day. I slept as much as I could last night and also took a nap and the hangover seems to be almost over. This time, it didn't last as long. I've been taking folate instead of folic acid and I think that's what is helping. The folic acid seems to cause migraines whereas the folate (the natural form) keeps the headaches from happening. I'm glad I figured out the problem.
11-19-2018, 06:29 PM   #13790
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I hope you don't get any more headaches. I had cluster (suicide headaches as many call them).
They went away, eventually. Thank God. I wish you good health, Miss Leopard.
11-28-2018, 07:30 PM   #13791
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I saw my new rheumatologist today and she is redoing all the lab tests with some others I've never had (including thyroid antibodies, which I have never been tested for). She is also getting new xrays for my back, hands, and sacroiliac joint. I see her again on Dec. 19th. In the meantime, she told me to continue my Plaquenil and methotrexate.
11-29-2018, 12:38 AM   #13792
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I hope it's for the best, Miss L.
11-30-2018, 11:40 AM   #13793
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I have bile acid malabsorption and ibs it's sever am I able to get any pip for itb
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