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Posts posted by greypilgrim256

  1. Well this is the 3rd week of Methotrexate.  It is not a fun drug to be on.  Nothing like a cold rainy monday morning after MTX.   I may ask if I can be switched to Cellcept.  As far as the renal crisis goes I have been testing my urine at home with those dipsticks and sometimes they are coming up showing protein in urine.  Pee is usually bubbly too.  I am going for a 24 hour urine test this week.  My GFR is 112, and my serum levels were all good last blood work, but the fact that the home dispsticks are showing up with protein is not reassuring.  I know the Prednisone could do this, and am currently in the process of tapering it, but can MTX also cause kidney issues? 


    I know Cellcept is usually prescribed if lung damage or kidney damage is present.  I will have to confer with sclero specialist. 

  2. Oh also, my Sclero specialist was none to pleased about the long dose of Prednisone I have been on.  We are going to start tapering it when I start the methotrexate.  I told her I was just following my other rheumatologist's orders, who I guess wasn't aware of the dangers of taking Prednisone with Sclero.  He diagnosed me with MCTD, but now we think that was a wrong diagnosis because of my ANA pattern.  Now I am worried that I have been doing damage to my kidneys.  


    I have been testing my urine at home with strips for protein and so far it seems okay.  She said to check my blood pressure often because high blood pressure will damage kidneys as well.  Is there specific symptoms that I should be on the look out for while I am tapering off the prednisone?  


    Can anyone recommend where I can buy an affordable machine to blood pressure?  Rite Aid, Target?  



  3. Well, after meeting with a sclero specialist I have been given a prescription for 7.5mg of Methotrexate a week.

    Can anyone give me advice or their experience with this drug?. I have very little skin involvement (limited to fingers/hands), have significant GI involvement, and substantial joint pain/arthritis symptoms which is why I think they are going with the Methotrexate route.

    Will be getting a full PFT soon to see if lung are affected.

    Anyone have any experience with Methotrexate? I have read that it might be best to take it on a weekend or at night because a side effect is fatigue, nausea, etc.


    My head is still spinning from all of this. 

  4. I actually do not have any hard skin, however, my index and pointer fingers on both hands developed fibrosis UNDER the skin. The actual finger itself is getting hard, developed sclerodactyly and is unable to be pinched and lost a lot of its ability to be bent.  They also lost some of their pigment and the knuckles of those two fingers that got that way are the only places that have the tendon friction rubs.  They are right on the knuckle and feel like a very tight rubber band being stretched.  


    I see you're from NJ.  Can I ask where from?  I live in Edison and am going to see Dr. Vivian Hsu next week the sclero specialist at Robert Wood Johnson in New Brunswick.  Hopefully she will be able to give me some more insight and address some of these problems.  

  5. Quiltfairy, have you seen an gastroenterologist yet for your swallowing difficulties?  That is one of my main symptoms right now, and I HEAR YOU. It drives me crazy too!  I am going in tomorrow for an endoscopy to see what they can see.  My doctor said they might do a esophagus stretch.  I have read it is a fairly common procedure, but I'm still nervous because I have never been put under before.  One day at a time.  Keep looking for the best doctors and support you can find because everyone deserves it. 

  6. Since being diagnosed I have been researching non-stop about this disease and my symptoms.  I've come across a few message boars and resources that describe treating Scleroderma, RA, MCTD, and other autoimmune diseases with antibiotics like minocycline.  Individuals claim to have great success with antibiotic treatment, but most doctors seems to dismiss it as nonsense.  


    I have also read conflicting NIH studies that both give plausible credit to it and some that say it is unproven.  


    Has anyone here actually had first hand experience or know of anyone that has treated auto immune conditions with antibiotics like minocycline?  This seems to be a very controversial topic.  Personally, I am very skeptical of many things and it seems too good to be true, but anything to keep the powerful  and toxic immunosuppresants away seems promising.  

  7. I have tested positive for Anti-RNP, hence the MCTD diagnosis.  I have tested negative for other antibodies (Anti Centrinome, Scl-70, etc)


    Can these other antibodies later develop or is what I have now going to stay this way?  I have read that it is VERY rare to have more than one antibody type with these diseases. 


    Can anyone chime in and enlighten me a bit?

  8. So tomorrow will be the first time I've ever been to a gastroenterologist.  I am going because my GERD/digestion issues are one of the worst symptoms I currently have.  I had been having some swallowing dificulties too, but Prilosec for a month has helped a bit.


    Just asking for any advice/questions I can ask the doctor. 


    Since I have been diagnosed with MCTD, which is an overlap of Sclero/Lupus/Myositis  I have the following:


    First and foremost, has he treated anyone with Sclero  or other autoimmune diseases.


    1) Nightshade family:  What is their impact on lupus/autoimmune diseases,  (I have largely been avoiding them for about 2 months....ate a tomato this weekend just to see how it would go and my tongue has ulcers on it now. Not fun)


    2) What are the adverse effects of long term prilosec/Proton Pump inhibiotors


    3) Are probiotics ok?  Are they bad?  Good? 


    4) What supplements are ok/avoid?

  9. Thanks! I just bought a bunch of disposable hand warmers,  so far that is going great.  Also bought a few pair of thin glove linings.


    Two fingers on my right hand started having some pus (Gross….>I know)it has come out from under the nail, which I assume is related to the Raynauds.  The last thing I want is a nail infection that won't heal because of less blood flow.  

  10. Is there anything to help this other than layering clothing?  Medication seems out of the option, as it is only my right middle finger right now, but it does get it pretty bad.  Are there supplements that might help?  I am not lookiing forward to this winter. 

  11. Hi Sharon,


    I hope you get your referral to the doctors in Houston quickly as they have a great reputation. There might be another reason why your joints are aching, like arthritis, and they can help to diagnose that. We all know how confusing it all is and hope you get answers.


    I have been fortunate in that I have not had too many aches and pains but I go for weekly massages and see a chiropractor weekly. This was a practice I started before scleroderma and continue with 10 years later. I am fortunate that both my massage therapist and my chiropractor are sensitive to my body and are very gentle with me. I really feel a difference if I miss a session. My hands were the biggest problem when my skin was very tight. I went to Occupational Therapy and had hot paraffin wax dips and they felt wonderful.


    After about 5 years my skin began to soften and is now back to normal. I was a 45 on the Rodnan Scale and am now a 0. The skin can begin to soften  after a period of time.






    Wow, that is great about your Rodnan score.  My skin tightening seems to be happening only on my hands so far.  I also have joint/muscle pain. I am interested in looking into massage therapy.  Do you know if its possible to have your insurance cover it?  Also, can I ask what type of medication you were on? 

  12. I was thinking along those lines as well.  Just figured I would ask someone with more experience in all this.  It seems to be slow, which I am thankful for.  Hopefully it stays that way.  Has anyone been prescribe Plaquenil?  It was the first thing given to me about a year ago.  I was never really sure how much it helped.  I think it helped with the joint pains, but thats about it, and even them I'm not so sure because I really didn't feel a difference until the Pred.  My swelling of my hands and ankles didn't lessen until the Prednisone either.  I kind of "forgot" what being able to squat and stretch was like without being in some sort of discomfort. 


    Can I ask what kinds of supplements to take or avoid that might help? I am taking Vit D3, B12, Magnesisum, Fish Oil, and Calcium.  Will probably start taking Vit. E because I have read that it is good for tissue. 

  13. Thank you both.  May I ask what were the side effects of the Cellcept? 


    I recently got my biopsy results back from dermatologist and they did show fibrosis in hand.  Should I urge my rheumatologist to just start with the Cellcept or wait until I meet the Sclero specialist in two weeks? 


    I feel that the prednisone is definitely helping to keep imflammation under control, but I have also read that the more aggressive treatment you start early the better.  I also meet with a gastro doctor next week so that may influence some things.  So many difficult choices to make. 

  14. Thank you for responding and for the links.  I guess I am fortunate to have had a rheumatologist who diagnosed me quickly.  It seems I already have an appointment with the Sclero specialist, Vivian Hsu, which is great.  I see her at the end of October.


    I have been testing myself for proteinuria at home and it seems fine.  I will consult more with the sclero specialist at the end of the month. 


    The odd thing about my symptoms are that I don't have the typical "hard skin" or at least I don't think I do.  What seems to be happening is that UNDER the skin of my fingers it appears to be developing fibrosis.  The actual tissue seems harder.  I don't know if that is just a precursor to the skin hardending or what.  All so confusing and upsetting. 


    Can I ask how long you've been on the Azathioprine?  Is that the same as Imuran or is Imuran just the brand name?

  15. Hello.  I was diagnosed this past June with MCTD.   I have a positive ANA + 3.0 Anti RNP.  The more I read about this the more I see it is linked to Sclero.  I have may sclero symptoms so I don't know why I bother calling it anything other than scleroderma.   I have slight Raynauds, GERD, nail splinters,  and my pointer fingers on both hands are getting more difficult to bend..  


    It started with swollen hands and fingers.  All the other symptoms started presenting themselves a few months ago, however I do not have Scl-70 antibodies, and my CT scan of lungs last year and heart ECHO seems to be fine.  



    I have a few questions.  


    Did anyone else test positive for anti-RNP antibodies.?


    Did anyone else's symptoms start out as swollen hands and NOT progress to sclerodactyly?  One of my main concerns is losing the use of my hands.  I have no idea how I would be able to work.  


    I am currently on 25mg of Prednisone which seems to help TREMENDOUSLY with swelling, but I know I am not supposed to stay on Pred for long term because of side effects.  


    What medications do others take?  Do they help?  I believe my doctor wants me to start Cellcept soon, but I am VERY nervous about starting it.  I have read that once you start it and stop it won't work well again OR your symptoms will come raging back hard. 


    I am having a very difficult time dealing with all this.  

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