1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

I feel lost. Please help

Posted , 14 users are following.

may66088
may66088

I have posted here twice before. Diagnosed 27th April after becoming I'

ll on a cruise. GP started me on20 mg Pred . My pains disappeared but

after 1 week because I seemed to react badly to the steroids she told

Me to reduce to 15. Everyone who answered told me it was too much of a

Of a reduction. The pains came back AND I still had all of the side effects

Since then have increased to 17.5 but am feeling no better. I am back to

finding it difficult getting out of bed in the morning. I have no energy

and have to lie down often . Should I start again at 20 and put up with

the flu like symptoms, the spaced out feelings, headache, funny

Hands, blisters in my mouth and higher blood pressure BUT get rid of the pains

0 likes, 28 replies

28 Replies

Next
  • ptolemy
    ptolemy may66088

    Posted

    Hi May, It seems you need the 20mg for the time being, reducing so quickly and by so much was obviously not a good idea. Rule of thumb on reducing is ten per cent max. at any one time. Sadly the side effects are worst at higher doses and usually get better as you cut down. Fatigue and fluey feelings are symptoms of PMR, although they do seem to get worse if you have problems reducing. I know I felt like death when I went from 20mg to 15mg after three weeks, as I was told to by my rheumie. I had headaches for the first time in my life with pred. My rheumie told me to cut out added salt to keep my blood pressure down. Pred only reduces the inflammation, it does not cure anything and the PMR is still there. My rheumie gave me the impression that once I started on the pred I would be back to how I was before PMR, how wrong he was, I don't know where they get these ideas from. The important thing is rest. I spent a lot of time looking at my diet too, as I didn't want a moon face and weight gain. I gave up gluten and simple carbs which seemed to work. PMR is life changing and can come back and bite you if you don't give in to its idiosyncracies. Pamper yourself and put your feet up.
  • rocketman42
    rocketman42 may66088

    Posted

    Hi May...I'm sorry for what you are going through. I just recently joined this forum so I don't pretend to be an expert and will leave the advice pertaining to a course of action to THE more experienced members.                                                                 However, having to endure multiple painful issues myself over the last 5 years ( 4 level spinal fusion, cervical radiculopathy causing burning pain and numbness in my hands 24/7 and now PMR ) I would like to offer you some motivational advice.             In life, many things don't go according to plan. If you fall, get back up. If you stumble, re-gain your balance. NEVER GIVE UP....NEVER GIVE UP !!!
  • Handbrake
    Handbrake may66088

    Posted

    HI May, it may be worth speaking again to your dr who knows your full medical history, The 'ulcers in your mouth' may or may not suggest A similar condition called lupus . Always worth getting things checked out .
  • Guest
    Guest may66088

    Posted

    Hi, I will only address the mouth issue since I am GCA only. One bad side affect of pred is "thrush" I received a prescription for a mouth rinse that cured me in 4-5 days. You swish the stuff and then swallow it. So sorry I do not have the name of it since I am away from home. Do hope you settle in soon, Ann 11195
  • EileenH
    EileenH may66088

    Posted

    It often makes things difficult when you try to reduce in big steps and allow a flare to develop - it is less easy to get under control. That is one of the unfortunate aspects of PMR I'm afraid. Accepting you are going to have a rough few weeks and that you ARE unwell helps. It will get better - you have to be patient. 

    Most people react badly to the steroids at first and remaining at a stable starting dose for a few weeks is important not only to get the inflammation well under control and the existing inflammation cleared out but also for your body to learn to live with the pred. Once that is done you usually need a lower dose because all you are looking for is enough to manage the new daily lot. I may have said this to you before but think of it as a bucket with a dripping tap - if the bucket is empty to start with and you add a cupful of water from the dripping tap and scoop out the same amount it won't overflow. If it is almost full you run the risk of it spilling over.

    The difficulty getting out of bed is fairly normal - the new lot of inflammatory substances is shed in the body at about 4.30am so are having an effect by the time you get up. Many patients take their pred very early and settle down for another couple of hours to allow it to work - the ideal time to take plain white pred is 2am so it is at its peak in the blood just before the inflammatory substances appear on the scene but that means waking up in the middle of the night which isn't very practical but some people do it. Plain white pred takes a couple of hours to work - enteric coated more like 5 or 6 hours or even longer.

    The lack of energy and needing to rest is your body telling you you are doing too much - pacing and resting appropriately is crucial. The fatigue is part of the underlying illness which the pred does little or nothing to help - all it can do is help you manage the symptoms by combatting the inflammation it causes which is what leads to the pain and stiffness and, to some extent, swelling. It is a bit like having flu, and many people say they FEEL as if they have flu. As long as the autoimmune part is very active you will need a bit more pred but at some point it does seem to calm down and be less active and then you will be able to manage with a lower dose, all being well.

    You may have raised BP for some time, even at a lower dose, but it is relatively easy to manage. As someone else has said - the ulcers may be thrush and you can get antifungal mouthwash/tablets for that. However, ask your GP to check your B12 and folate levels because they could also be contributing - mouth ulcers are often a sign you are deficient in folic acid and that is easy to sort out too.

    So yes - if it were me I would ask to go back to 20mg until all the PMR symptoms have improved as much as they are going to. Then reduce - but far far slower next time. One mg at a time is quite enough - 1mg that works every few weeks is faster than an attempt at a bigger reduction that doesn't. In this link

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    you will find other links as well as a very slow reduction plan that has worked for many which is in the replies section after the first post with the links. It is in use by a clinical study in the north of England - so supported by experts in PMR - and it and similar versions have been used by members on all the forums to get to lower doses than ever before. Some people are more sensitive to pred and changes in dose than others - this is a way of "hiding" the change in dose until your body has accepted you aren't really doing it a disservice!

    And if you still feel lost - have a look at the other forums too (the links are in the post). Each is a bit different from this one and the other two are perhaps a bit less formal - more like a support group would be. I assume you are in the UK? There may be a support group near you or you may find someone who lives nearby so you could meet for a coffee and a moan with a real person who really does understand because they have the t-shirt - because it does help you feel a bit less lost and alone. The HealthUnlocked forum is probably the best for finding other patients as it is run by the national charity but the NE one has been about longer and their website has a LOT of info. All the forums have people from all over the world - never boring!

     

    • may66088
      may66088 EileenH

      Posted

      Dear EileenH thanks for your long reply. When I reread my post I felt

      I was moaning and felt quite embarrassed. I feel that I have never felt so

      Ill. I am trying to keep positive and will ask my GP if I can go back to the 2

      20

    • EileenH
      EileenH may66088

      Posted

      Don't apologise - when it is new and scary almost everyone feels like that and that is why we have the 3 forums - lots of us who have been there and got the t-shirt, not to mention read the book and probably starred in the film! We know what it is like and can help by listening and presenting the facts. Facts that, more often than not, the doctors aren't aware of.

      It will get better - though it may take a bit of time, if you don't learn anything else you will learn patience! But this time next year you will look back and see how far you have come. You can't cure PMR but you can learn to manage it fairly well until it decides to go away which it does for the majority of patients. This isn't a short game - you are looking at a couple of years at least, possibly rather more but you won't feel as bad as you do at present for all of the time. You have to learn to manage things too - pred helps the pain but you have to manage your spoons: google the spoons theory by Christina Miseriando to understand that.  wink

    • may66088
      may66088 EileenH

      Posted

      I should have mentioned that I am B12 and zinc deficient which are supplemented.

      Also I have joined the NE branch and. Had information from them

    • EileenH
      EileenH may66088

      Posted

      You're doing well - the NE branch is good stuff. Are you close enough to go to one of their support groups?
    • jancorb
      jancorb EileenH

      Posted

      Thankyou again Eileen

      You have reassured me again on the way forward, slow and careful. Useful hint about taking preds early, I now have my Omeprazole on waking and preds 30 mins later, with food.

      I've gone down to 13 mg with very few problems, but will taper more cautiously from now on. Keep up the good work.

      Jan

    • may66088
      may66088 EileenH

      Posted

      I am in York and would be willing to travel to a support group meeting,

      Preferably by train. May

    • EileenH
      EileenH may66088

      Posted

      The Gateshead group has their meetings in Gateshead library

      Prince Consort Road Gateshead - the next is on 27th June and the Middlesborough group meets at Marton Hotel & Country Club, on the 29th June.

      You'll get further details from their website.

      I also know another lady who is close to York I think - but she's on another forum. 

    • may66088
      may66088 EileenH

      Posted

      Eileen what is the 3rd forum.  I am on healthunlocked as well as this one
    • EileenH
      EileenH may66088

      Posted

      The one attached to the NE support group site. It is just in the process of switching to a new host so the link that is in the patient.info resources post isn't correct. Thanks for reminding me I need to tell the moderator!

       

  • gentian
    gentian may66088

    Posted

    Hello May

    I had a similar experience with prednisolone.  First day it seemed the answer to all, not so good later on they made me weaker,  I also am now off steroids - but whew it was a struggle!

    I have heard from several medical people I trust that you can cut down quickly if you havent been on the drug for long - I mean a week sort of thing.  Staying on prednisolone for months means your own system ceases to make the necessary  . . ???? . . and has to be persuaded gradually to take up that task again,

    So after a few weeks you need to reduce with care, by increments.  

    If the docs say you are ok to cut preds fast, and you havent been on longer than a few days, AND they are doing you no good, I would say Stop the beastly stuff!

    Very good luck.

    • EileenH
      EileenH gentian

      Posted

      I thought you said you'd been told you don't have PMR but "another myalgia"? Did they come to a decision as to what it was? I have yet to have any side effects of pred (and I've had some dandy ones) that were worse than untreated PMR! I had 5 years of unmanaged PMR - and a couple of major flares in the 6-odd years I've been on pred. Nothing would induce me to go back, even to get off pred.

      May has been on pred since the end of April - and that is long enough to need to reduce slowly. It depends on the dose but at PMR sort of levels a month is long enough to require it.

    • Padada
      Padada EileenH

      Posted

      This seemed like a good time to enter this discussion with my question about my current PMR situation.  I have had PMR for 18 months and started prednisone at 15 mg. I found this wonderful site and learned how to reduce the DSNS way.  However, last year when I got to 12.5 mg I had a flare and had to increase to 15 mg again. Since then I have successfully gotten to 13.5 mg. and now had a flare two days ago. 

      I increased back to 15 mg. the next day, and then 14 mg yesterday.  I have two questions please:  how long should I stay on the higher dose before returning to 13.5 where I was last OK?  And why can't I get past 13 mg without a flare?  I am discouraged of course.  I wouldn't mind taking the prednisone if it didn't cause me so many side effects. 

      I have read here that methotrexate may help someone like me, but i really hate to consider it beause it has awful side effects too.   This is such a valuable site and everyone is so generous with their help.  So thank you so much.

    • EileenH
      EileenH Padada

      Posted

      It's difficult to say - it is possible that the underlying disease is very active and has been so the whole time. It may also be you are very sensitive to dose change even with the DSNS approach and you need to bear with it a bit longer. Does the "flare" start immediately you reduce to the lower dose or does it creep up on you?

      What does need to be considered is whether in fact it really is PMR. LORA (late onset RA) can present identically to start with and joint damage is far less common than with RA that starts at a younger age. If it were to turn out to be LORA then methotrexate would be the first line drug - and many many people with RA take it with few problems. If you are able to take it without problems - or if it makes you feel nauseated use injections - then it is worth a try. Every drug has lists of side effects that sound horrendous but many people have none or next to none - you wouldn't take ibuprofen for a headache if you read the side effects profile closely! A friend is on methotrexate alongside the pred for PMR and it has worked really well for her - she has got down to about 5mg I think.

    • Padada
      Padada EileenH

      Posted

      Eileen,  I was tested for many autoimmune diseases at the onset of my symptoms, and most others were ruled out.  Is there a specific test for LORA that I should now ask for? 

      To answer your question about  when the flare starts for me when I reduce to the lower dose - at first the lower dose seems to be OK,  then  the flare creeps up on me.  Does that indicate something ?

      Also, I thought that taking methotrexate wasn't really part of the protocol for PMR or reduicing prednisone,  and yet I read here about several people who have been put on it for reducing prednisone, including your friend.Thank you for answering my quesitons.

       

    • EileenH
      EileenH Padada

      Posted

      It does sound more like a flare than your body protesting at the new dose. It suggests there is still a fair bit of existing inflammation so it doesn't take a lot for it to reappear - maybe a short time at a higher dose might clear that out and then you might be able to reduce better.

      Methotrexate isn't really a fixed part of the protocol no, but a lot of rheumies do try using it. In the most recent guidelines for managing PMR they suggest using it - but only in discussion with the individual patient. You'll find the link about halfway down this post:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      and look at recommendation 7. It works for some people - why or why not isn't clear except maybe it wasn't PMR...

      No, no real definite tests for LORA - it's a clinical diagnosis, on the basis of history and symptoms, just like PMR. That's the problem because they can be so similar. When RA starts in younger patients you tend to see joint damage relatively soon and that clinches the deal. There are all sorts of autoimmune arthritis with no tests to confirm them and they can look quite similar for a long time.

      Personally, I would never suggest to someone who had got to well below 10mg pred that mtx might be useful - but I do think it is worth trying when you struggle to reduce at all from a starting dose of 15mg, If after a few months there isn't an improvement or if it makes you unwell from the start I'd stop - you won't have lost anything but if it helps you have gained. There are rheumies who want people on below 5mg to go on it - I think that is a bit silly. I believe in Germany it is used routinely right from the start but I haven't seen any literature about that. 

    • Padada
      Padada EileenH

      Posted

      Thank you Eileen, your input is always valuable and appreciated.  I especially like your reasoning regarding trying it for a few months to see if there is an improvement, and that if there isn't I won't have lost anything, but if there IS and imrovement I will have gained.  Very logical.

      If there is anyone on the forum that has taken methotrexate to assist their taper from prednisone, or is taking it currently, please let me know how you are doing on it.  Any side effects? I would like hear from you. 

    • FlipDover_Aust
      FlipDover_Aust gentian

      Posted

      I'm confused.... your other post just said you had 'myalgia' and you need walking sticks/crutches to walk - but if the pred 'fixed' it and now you are not taking it you can hardly walk, it sounds like you still have PMR????

      Have you tried going back on pred to see if it reduces your pain? (and confirm that you have PMR) 

    • FlipDover_Aust
      FlipDover_Aust Padada

      Posted

      Hi Padada - I'm on MXT. So is Suzanne M. Below I've posted the links to the three conversations I've started regarding my experience on MXT.  I started on it back in Dec last year.

      https://patient.info/forums/discuss/-things-are-going-to-be-be-pretty-awful-for-you--489879

      https://patient.info/forums/discuss/my-experience-with-methotrexate-and-the-auto-immune-protocol-diet-or-the-worse-than-paleo-diet--501840

      https://patient.info/forums/discuss/five-months-on-mxt-an-update-514391?page=0#2124894

    • Padada
      Padada FlipDover_Aust

      Posted

      Thank you FlipDover for the three links.  I am glad to hear that you are doing well on it.  You are so fortunate that you have no side effects from the mtx.  I appreciate your response to me. 
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.