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Uggh

Posted , 10 users are following.

linda04580
linda04580

Doc said today that I must not also have GCA because the biopsy was negative and the eyes look good according to opthamology.  My stomach has been acting like my ulcers are acting up so she bumped me from 60 to 20.  That was 4 days ago... I thought I was going to be in the hospital!!! I almost signed myself in...  now stomach doesn’t hurt inside but I feel squeezed from sternum to knees .. like a python squeezing me.. pain is back in knees and shoulders but not quite as bad.. I mean I can move but it just hurts and burns like pins/needles also numbness and tingling in my fingers and lips and tongue.  Eye pain is also back.. 

Rheumatology Dr and I spoke today she is switching me from prednisone to methylprednisone.  She talked about some other medicines ..we will see ea other Thursday she spoke about going back up to 30 then called in the RX of methylprednisone to the equivilant of 20 mg so I am not sure what I’m supposed to take. 

I worry my symptoms may include MS symptoms because when I was trying to see if it was a flare or prednisone withdrawal that’s what popped up for my symptoms anyone else have this?

2 likes, 17 replies

17 Replies

  • Michdonn
    Michdonn linda04580

    Posted

    God help you Linda, a reduction 60 to 20 should have your body hurting. I wish all the Rheumy were required to read the PMR guidelines. I would taper, the reduction is to drastic, 10% every couple of weeks. But stabilize your condition. Good luck, try to think positive.
    • linda04580
      linda04580 Michdonn

      Posted

      Hi Mich, my stomach started bleeding that’s why she tapered so fast, but now she switched it from prednisone to methylprednisolone and up it to the equivalent of 30 mg.  I did that last night... today a little better.

      Thanks for your care.

      Linda

  • lilian05079
    lilian05079 linda04580

    Posted

    Hi linda04580

    What your experiencing is 'Paresthesia'

    numbness, tingling pins a pins needles sensation. This is common when taking steroids and suddenly dropping dose. I can recall getting this when i withdrew from preds, but it subsided after a while. Hope this helps..my very best wishes to you linda04580...

    • linda04580
      linda04580 lilian05079

      Posted

      Oh thanks Lillian, I didn’t know that could happen, I was sick with worry, thank you for this insight,

      Linda

    • lilian05079
      lilian05079 linda04580

      Posted

      Hi linda04580

      I am soo sorry you are feeling so wretched. I do hope you will get some answers at your appointment today and they do admit you and carry out the appropriate tests as to why you are experiencing such awful pain. I will be thinking of you and hope you can keep us posted with a positive outcome....my very best wishes for linda04580...

  • EileenH
    EileenH linda04580

    Posted

    Don't listen to Dr Google when you just dial in symptoms - you'll end up thinking you are dying!!!

     

    • linda04580
      linda04580 EileenH

      Posted

      I know... and I did.   ..  glad to get some clarification.
  • ken2121
    ken2121 linda04580

    Posted

    My Dr. switched me to methylprednisolone from pred. and started at 16mg and now after 4 mos. I am down to 5 - 6. Couldn't get lower than 8 for a couple of mos.  The difference is that methyl bypasses the liver and thus may work for some people where pred. does not. I personally didn't perceive a difference between the two drugs.

    All the online info says they are used according to Md. preference. One thing since I have been on these forums is how sadly inept the general Md. And Rhuemy population is about PMR. It must be because they can't make any money diagnosing and treating it.

    • EileenH
      EileenH ken2121

      Posted

      I had no problems with prednisolone nor the prednisone I now take. Methylpred was awful: I gained a lot of weight, became typically Cushingoid with a black beard! I developed muscle atrophy and felt generally awful and it didn't work for about 12 hours. Never again!

    • linda04580
      linda04580 EileenH

      Posted

      I hope I don’t get all that,. 75% reduction in pain taking the equivalent of 30 mg methylprednisone 
    • EileenH
      EileenH linda04580

      Posted

      I know loads of people who have been on Medrol who were fine. It just goes to show how different we all are - including possibly needing different cortisosteroids. But it is something the doctors don't seem to appreciate for some reason. 

      But at least you have pain reduction with it - I didn't even have that as a bonus to compensate for the rubbish!

  • stanley36717
    stanley36717 linda04580

    Posted

    Linda0458, 

    ?If you had a biopsy on one side that was negative, do the other side, and don't drop the pred too fast. I had a false negative and later lost partial sight in one eye. I later read that 20% (or so) of PMR patients get GCA and then 20% (or so) of the negative biopsy's are false. After I lost the sight, all the doctors told me what should have happened.

    • EileenH
      EileenH stanley36717

      Posted

      A study did show that actually the chances of even a second biopsy being positive are not high. The bottom line is that symptoms and response to pred are ahead of a negative biopsy result. GCA should be a clinical diagnosis - the TAB is just supporting evidence. Unless it is positive - that is 100% reliable evidence you have GCA. But there are other forms of vasculitis that can cause the same sort of symptoms and unfortunately the TAB is reliant on the surgeon being expert (and it is often left to anyone around) and the histopathologist also being good. I know people who were told "negative, not GCA" where a much later examination of the slides by an expert did show signs of inflammation typical of GCA, missed the first time round.

  • linda04580
    linda04580

    Posted

    The neuro opthamologist told me that my optic nerves and eyes look “pristine” stated that it is “impossible” for me to have GCA do to age (50), Rheumatology decreasing based on this plus stomach issues.. but headache and eye pain returned.  I see her today.  Stomach is so bad I can’t breathe right.  Pain in neck and knees and feet I am going to demand to be admitted I can’t keep feeling this way much less work.
    • EileenH
      EileenH linda04580

      Posted

      It may not be GCA and I hope it isn't - but if so it is not for the reasons they say.

      The guidelines say "over 50" - but that doesn't mean younger people don't develop GCA. My go-to for that is a media report in South Wales of a 37-year old man who died of a stroke (I think) but the pathologist - the person who always finds and knows the truth but too late - found he had undiagnosed GCA. Proven by histology. It is not common - but that doesn't mean it doesn't happen. And 50 is a perfectly usual age to find pateints.

      GCA can affect many arteries - but it doesn't always affect all arteries, in the head or anywhere else. Unless the arteries supplying the blood to the optic nerve are compromised enough to reduce blood flow to a level causing ischaemia in the nerve the best neuroophthalmologist in the world won't see anything. Still doesn't mean you don't have GCA somewhere else.

    • linda04580
      linda04580 EileenH

      Posted

      My biggest complaint right now is my stomach feels like something is wrapped around my mid section squeezing me, which makes me feel short of breath.. also numbness and tingling in knees feet lips and tongue.  Rheumy sent me to ED and said to stop prednisone.  ED says I’m not dying.. abdominal CT CXR normal.  Crp up ESR normal they discharged me and said to follow up with primary care now waiting to get squeezed in with primary care.  Feeling frustrated!!
    • linda04580
      linda04580 EileenH

      Posted

      My GP gave the diagnosis of PMR, the Rheumatology Dr concurs.. they are not sure if I have GCA, they are sure I have a bad case of gastritis and a couple small ulcers in my stomach, decreasing prednisone to 10 now, with stomach protection carafate and protonix 

      Dr wants to put me on methotrexate or plaquel once my stomach calms down a bit more.  Headache and eye pain intermittent today and hips hurting, sides hurt but I think that’s from my stomach.  My CT SCAN showed calcified atherosclerosis in my intra-renal aorta.  I am not sure what that means.  ...  hoping to feel better soon!

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