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neuropathy

Posted , 11 users are following.

gina30088
gina30088

Hello all

And so goes the roller coaster

When decreased from 15 , all hell broke loose

Besides shoulder blade pain, I have a problems with my  hands and feet, cramping, and shooting pains and achey

Worse during night, when i am fatigued, and such a general feeling  when I wake i dread going to bed.

Notice some improvement two hrs after pred amd that lasts a few hrs

Have call into dr, I know she is going to want to start methotrexate

I know that gets mixed reviews on this site,but if I go with it can anyone share side effects?

Most worried about, hairloss as already wear a hairpiece

Thanks in advance

Gina

 

1 like, 15 replies

15 Replies

  • jennybshaw
    jennybshaw gina30088

    Posted

    Sorry to hear about your pain.  I too have succumbed to horrible pain in my back, legs, backs of arms, and feet.  Have no idea if this is the  rheumatoid or the PMR.  So frustrating and miserable with pain.  I took methotrexate for my rheumatoid for about a year but it did make me feel bad however my husband and nephew and many others have tolerated it well for many years.  I think you will have 5o try it before anything else.  I ended up on Enbrel which I tolerate very well.  Believe me more people than not tolerat3 methotrexate fine.  One side effect I had from it was that it made my hair curly and very frizzy in one spot.  I didn’t lose any hair though.  My husband and nephew did not have any side effect like this.  Sorry I can’t be mor3 helpful but hope you get sorted out.  Remember you can always stop a med and go to another if it doesn’t suit you.  Good luck and keep us posted on your progress
  • Reeceregan
    Reeceregan gina30088

    Posted

    Hi Gina,

    I'm very interested in this, as this is exactly my scenario. Down from 50mg, to 37.5, to 25, then 20, then 15 (also have GCA as well as PMR) and steadily dropping at 1mg but like you '"äll hell broke loose" 'with the same symptoms at 15, and hasn't really improved.  GP suggested I go on methotexate as well but I balked at that, and now also have to go on Prolia for severe osteoporosis ( i'm 62, diagnosed with PMR/GCA 6 months ago). I'll be watching responses with bated breath and a wine in hand...

  • darlene36688
    darlene36688 gina30088

    Posted

    Hi all....Was told on July 30,2017 at the emergency room I have Arteritis. Was put on 60 mg. of prednisone. Three weeks later I saw my rheumatologist. My face was very very swollen. Rhuematologist decreased it to 40 mg. When I saw my doc 4 weeks later there was very little difference in the size of my face. He then decreased it to 20 mg. Then he cut back to 15 mg. Now I'm taking 12.5mg.  My last prednisone will be Christmas Day. My next appt. is Jan 8th. I also take fosamix 1 pill weekly.

    Have had a problem with headaches  (it lasted for 7 days straight). I don't know if this has anything to do with the reduced prednisone or not. He wants me to see a neurologist. This doctor can't see me till April 30. He told me I have GCA and PMR. I do tend to have problems with my neck & shoulders. I have terrible fatigue.

    Just wanted to get a feel for this site. I really enjoy reading all you posts.

    Thanks.

     

    • EileenH
      EileenH darlene36688

      Posted

      If you really do have GCA - you need pred and a sensible doctor as an emergency. If the headache has returned as you reduce the pred it could either be the reduction or it could be the GCA. If it is the GCA - you really do need pred.
    • darlene36688
      darlene36688 EileenH

      Posted

      Have been in contact with my doctor. I failed to mention in my earlier post I'm a 69 year old female. 

      He told me NOT to go off the prednisone at Christmas and he sent me for new labs.

      He does a great number of labs when I see him. I see him once a month.

      My doctor is 2 hour's away from me but I think the world of him. He has gotten me thru some bad times with this GCA and PMR.

      I go to MUSC (Medical Univ. of S.C.) There is a patient forum  on line for MUSC so I can send my doctor a note & I am guaranteed a response in 2 days. That is a big help.

      I asked him if I should have a MRI since I can't get in to see the neurologist till April 3  but he didn't answer that question. Would a MRI be useful?

      At present I'm on 12.5 mg. of prednisone.

      I hate being on this drug. I've gained weight (my clothes don't fit)  & my face puffed up. Since I've been on the 12.5 mg. for a while some of the puffiness in my face has gone down some. I just obsess that he might increase it when i see him in January.

      I guess if it helps I'm just going to have to wrap my mind around it & just deal with it.

      We leave tomorrow to go to our daughter & family for Christmas. Can't wait to see the grandchildren,

      Went to Tenn. for Thanksgiving to our son & his family & that was fun.

    • EileenH
      EileenH darlene36688

      Posted

      You can help with the weight gain by cutting carbs drastically - I lost 35lbs while still on between 10 and 15mg. Cutting salt also helps the puffiness - pred makes you retain fluid, salt makes it far worse (so do carbs if it comes to that).

      If you have GCA you NEED pred - because the alternative is you are putting your vision at risk. Being cuddly is nothing compared to being blind. 

      I'm really not sure that an ordinary MRI will show anything except in VERY experienced hands and being on pred does mean the other sort won't show anything meaningful.

    • Michdonn
      Michdonn darlene36688

      Posted

      darlene, none of us enjoy being on Prednisone, but it sure does beat the alternative. I will take a little weight gain to be PMR pain free. Here I am skiing in NM, thanks to Pred.

      Thinking positive and smiling.🙂

    • darlene36688
      darlene36688 Michdonn

      Posted

      I didn't mean anything about the weight gain other than this is all new to me.

      I must say the prednisone has done wonders for me.

      Just don't like that each week having to pack away another pair of jeans.

      Hopefully, this will reach a plateau and I'll feel more like myself prior to GCA/PMR.

    • darlene36688
      darlene36688 EileenH

      Posted

      Thanks, Eileen.

      I do have GCA and PMR.

      My eye doctor (specialist) sees me every 6 months.

      I feel very blessed to have the eye doctor & rheumatologist working with me.

      I see my rheumatologist on Jan. 8,2018.

      I believe confidence in your medical team is a must.

      I was diagnosed 2 year's ago with Sjogrens Syndrom (another autoimmune disorder).

       

  • EileenH
    EileenH gina30088

    Posted

    It could be myofascial pain syndrome - which will calm down at higher doses of pred and then return as you reduce the dose. It is more common in people with PMR and is caused by the same inflammatory substances as PMR except in PMR they are systemic and in MPS they are localised in the muscle fascia and in trigger spots of inflamed and hardened muscle fibres in muscle groups. Mine tends not to return until lower doses than you mention but everyone is different. 

    You will find how you will respond to mtx when you try it - everyone is different in that context too. But it won't touch MPS, that tends to be a mechanical problem and needs more targetted management. 

    • gina30088
      gina30088 EileenH

      Posted

      Thanks Eileen

      I looked that up and it does fit in many ways..

      I keep saying if you could put me on a stretching rack I think it would help, but yet if I stretch out my feet  they seize up..

      I am planning to ask my doc about this at Fridays appt..

      Happy Holidays

      Gina

    • EileenH
      EileenH gina30088

      Posted

      Yes - I often think I'd like the feeling of being stretched!!!

  • judy93591
    judy93591 gina30088

    Posted

    Hi, Gina, I have been on this long journey for 2 1/2 years. I have been on Methrotrexate for approx a year. It has helped me wean down to 5 pred at this time. But, I have been up and down between 2 1/2. -5 on pred. I didn’t have any side effects from Metotrex, but lots from pred. My hair has came back in really well. Somewhat curly even. I am not pain free. Like you, worse with stress or over activity. I haven’t found a happy medium yet. I am in US. Merry Christmas, treat your kindly and Hugs 🤗 to all on this forum

    • gina30088
      gina30088 judy93591

      Posted

      Thank you so much Judy

      I too am in America, chicago area!

      I was worried about hairloss from Metho

      Never had from Pred... my loss was years ago, unexplained 

      Glad to hear you didnt experience side effects.

      Happy Holidays to you and all!

      Gina

  • Michdonn
    Michdonn gina30088

    Posted

    gina, sorry it hear of your problems. I have diabetic neuropathy, been a diabetic for 55 years. Pred has made the neuropathy worse. As the dosage have been reduced the neuropathy problems have been reduced also. Good luck on the rest of your journey. Try to think positive and smile. 🙂

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