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Polymyalgia steroid use.

Posted , 19 users are following.

achingman
achingman

What are the implications of not taking steroids? I have had PMR for 6 months and have just been

prescribed the usual ...prednisolone by my Rheumatologist. I am more frightened by the steroids

than by this illness. I don't want to take them. I was miracle cured by ibuprofen. I stopped taking it

and the symptoms returned. All the accounts I have read about steroids say the same. Stop taking

them and the symptoms return. Except with steroids you can't just stop as you know you must carefully reduce. Why are steroids better than ibuprofen? Does anybody anywhere

know what the implications of doing nothing are? What is the prognosis for this illness?

Am I more likely to develop GCA with or without the steroids? Much information is available about

steroid use but I can't find any information at all about non-steroid use. Before I commit to a minimum of 2 years on these pills can anybody shed light into this dark area?

2 likes, 59 replies

59 Replies

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  • Mariah333
    Mariah333 achingman

    Posted

    I am wondering how everyone here who has contributed to this discussion is doing? All of the information is very helpful right now as my partner has been diagnosed with this debilitating condition, Polymyalgia Rheumatica and is suffering pain, has low Vit D levels and is slightly anaemic, with his blood markers showing 44 times more inflammation than normal. His doctor has prescribed steroids, but he does not want to go that route if it can be avoided. I can see all sides here and also that the symptoms which struck so suddenly, him being a very active, healthy person, eating well and a non smoker, daily walker and fit as a fiddle prior to all of this, appears to be suffering with what is described amongst you here. I have been looking into the matter of vitamin D which apparently is not a vitamin but a hormonal steroid and discovered that there can be bone pain and muscle weakness associated together with tiredness and many of the symptoms are very similar to PMR. Not ony that, lack of Vit D can start with what is known as a 'sweaty head' and he had a lot of heat in the head at the outset, so much so that he was initially thought to have Temporal Arteritis, but this was dismissed after tests and by a specialist as not being the case. It is a puzzle...putting all the pieces together. The doctor has said that if he tries the steroids for a week, and they don't work, then he would know it wasn't PMR, but he thinks that it is. We are looking for herbal information, and natural ways and means to relieve or benefit the condition, and any experiences which demonstrate a light at the end of the tunnel with such methodology. My heart goes out to you all as I can see how painful and limiting this is and appreciate all of the comments here, including the reassurances concerning corticosteroids, because if that ends up being the only solution, then it is good to know that there are those who have benefited from taking them. Thank you again and wishing you all well. Any updates or information is welcome.
    • EileenH
      EileenH Mariah333

      Posted

      Many of the contributors on this thread are no longer members of the forum. Very often that is because their PMR has gone into remission or, like me, they are living well on a low dose of steroid. I'm here because I do a lot of work with the support groups. 

      If you follow this link

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

      you will find links to further information and other forums (there are 2 more in the UK) with other patients, both of them tend to have more people still contributing while on pred and living relatively well.

      There is no other medication that works in PMR - I know there is a lot of info on this thread from me and without reading it I don't know if I'm repeating what you already know. I'm sure I have explained the fact that you can't simply say "no pred is good" because that leaves uncontrolled inflammation in your body which causes vascular damage and other damage which predisposes you to other illnesses including cancer. They are none of them very nice.

      If you are looking for herbal information you are in the wrong place here - you need to search the alternative medicines thread. This site is very strictly monitored and such things are kept out of these specialist forums.

      I had PMR for 5 years without pred, it simply wasn't diagnosed as I was "atypical". If your husband is ill enough for you to be looking for other options then I think you need to consider steroids. I managed my life with Pilates, aqua aerobics and rearranging my lifestyle - I was a freelance translator and could do that. It wasn't pleasant and I wouldn't swop being on pred and relatively pain-free for that again. I am down to 4mg of prednisone, all the side effects I developed with Medrol have gone, I have lost 19kg in weight and am well. Last time I tried to reduce again the PMR appeared to be still there.

      I know of others who claim to have had benefits from alternative diets - but they were also able to spend vast amounts of both money and time getting the foodstuffs they swore by and had to prepare meals from. I couldn't have done it in either sense. Their posts (not on this site) did not sound as if they were pain-free by any means. After I started pred I realised very quickly that what I had thought was not a bad life was actually VERY limited and VERY painful.

      I really don't know why you feel it is not a good approach to try your doctor's suggestion of a week of pred. It certainly shows you how disabled you are if it does turn out to be PMR. I imagine your doctor also hopes to use that as a means to rule out some of the other causes of the symptoms - some of them are rather nastier than pred-responsive PMR and also include cancers. The symptoms can be identical to the PMR we discuss here but don't respond to pred.

      He won't remain on pred at the starting dose - you get the inflammation under control and then reduce to find the lowest dose that manages the symptoms. Done slowly and carefully as propounded by many of the members here he may get to a daily dose well below 10mg, round about the amount of corticosteroid the body produces naturally and with far fewer side effects.

      There is some dispute as to whether untreated PMR is more likely to progress to GCA (what you referred to as temporal arteritis) but which can affect far more arteries in the body than just that one. If he were to develop that he would be foolhardy to reject pred - the risk is you go blind without high doses of pred. There is no going back once that has happened and it can happen very quickly and with little warning.

      There are many people who have used pred, reduced successfully and got off pred - you will find their stories on the support site and forum from the NE of England PMRGCAUK support group, the first couple of links in the post I gave the link for above. Some manage it in 2 years, some take far longer - I have had PMR for over 10 years. Would it have gone faster had I been on pred sooner? No way of knowing but I do not want to go back to no-pred PMR. 

       

    • Mariah333
      Mariah333 EileenH

      Posted

      Thank you Eileen for taking the time to respond so fully and I will pass on all of this to him and read it several times over myself. It is most kind of you to elaborate. He is very concerned about medication and any information is appreciated. I simply wasn't aware of this illness until his diagnosis recently and applaud your dedicated approach to getting well. The links too are appreciated.
    • Tricia172
      Tricia172 Mariah333

      Posted

      Hi Mariah. You may have already read my post further back. I was fortunate to have a relatively mild dose of PMR and managed with my GP's support with Ibruprofen which eased the aching enough for me to function.

      i know that would not work for many, and I was also lucky that the Ibruprofen did not have any side effects for me. I always took it with food and never more than 400 mg twice daily. If it had not been effective I probably would have reluctantly tried the steroids as I understand that for many the aching is unbearable without.

      My GP checked with a rheumatologist whether not taking steroids would delay my recovery and was told this was not the case. It did not lead to GCA, although I was warned to watch for symptoms. I was told a mild case like mine would go in 18 to 24 months and that is what happened. After 18 months I was able to come off the Ibruprofen and after 24 months was completely symptom free.

      Because I didn't take steroids, I developed anaemia and weight loss, which are noted symptoms of PMR, so watch out for those.

      I found some supplements helped, in particular Curcumin which is anti-inflammatory. I ate very healthily and stopped all caffeine except for green tea, alcohol, processed foods and ate very little sugar. Vitamin D is a must, I was also low, and there are oral sprays which are very effective.

      I wish your husband all the best and please come back to me if you have any further queries.

      Tricia

    • EileenH
      EileenH Mariah333

      Posted

      I'd just like to add to Tricia's comments.

      I found ibuprofen did nothing at all for the PMR pain - and that is a common finding. While ibuprofen never made me ill and obviously that is also the case with Tricia who probably used a lot more than I did, one lady on another forum took 3 doses as told to by her GP for early PMR (it is suggested in some guidelines) and ended up in A&E with a coffee grounds gastric bleed. As I say, it never achieved much for me and given the possible side effects - what I have experienced with pred used proerly is nothing like as bad as the potential effects that I have actually seen with ibuprofen.

    • Mariah333
      Mariah333 Tricia172

      Posted

      Hi Tricia,

      Thank you and I will let my husband know of this. He has taken Ibuprofen on two occasions and was astonished at how effective they were. The pain was relieved and he had better mobility altogether. I am grateful for your reply and very pleased to hear that you became symptom free. that's marvelous. I have Circumin and also Oregano oil which he feels is a good thing and he was prescribed Vit D 800iu just yesterday. Your peristence is inspiring. He may want to know a little more, so thank you for offering the open door. Take care, Mariah

  • Jill48
    Jill48 achingman

    Posted

    Hi aching man

    And Maria, I'm doing fine. To recap - I managed without steroids.  It took 18 months for most symptoms to clear up and another few months for the shoulders and arms. I took ibrofen and panadol osteo. Sometimes together, sometimes one at a time. Twice, I also took 5mgs Pred for 1 week when I had to drive a long distance. It just took the edge off the pain and I had no problem stopping after use. Maybe the withdrawal symptoms take longer to develop. Or maybe if I'd taken 15mgs it may have been harder to stop. 

    The doctor who suggested trying steoroids for a week sounds on the ball. I found pharmacists to be very helpful and took the advice of one who suggested a 3 week rotation of Ibrofen, panadol osteo and Prednisone.   I didn't take the pred though. I did tke Vit D and my iron was down so took supplements and i was careful with diet. 

    I've made a full recovery and would wish the same for you. Do hope this helps.

    Hi to you Eileen. Are you still skiing?  Hope so. 

    Best wishes 

    Jill

    • EileenH
      EileenH Jill48

      Posted

      Afraid not again this winter Jill - but not PMR that got in the way. There was next to no snow before Christmas and the prices have got silly so since I would need to ski a fair no of times I decided it wasn't worth it - it means being out on my own since my husband won't come with me. My daughter and children did come at short notice - if I had known they were coming sooner I'd have practised a bit!!
  • pam7653
    pam7653 achingman

    Posted

    I was 60 when I was finally diagnosed with PMR. When I was 58 I was diagnosed with hyperthyroidism. After 2 years of treatment for this my numbers finally were back to normal. I still had pain in my hands and aches and pains from my hips to my knees. I was taking ibuprofen to help with the pain, not knowing what was going on. I was told when you get one autoimmune disease you can easily get two. After a year or so of taking Ibuprofen I started having heartburn on and off. One day it was so bad after 3 days of suffering with it I took myself to ER (I was stupid for driving myself). They tested me for everything, I thought I was having a heart attack. Pain all around my heart. The tested everything. EKG, gall bladder, pancreas (showed 2 small cysts) and a hemangioma in my liver which I knew I had since 2 yrs previous from a CT scan. Other than that the tests showed nothing.

    I was given Naproxen for pain from then on. Well after a week taking that I felt great. So I demanded to see a rumatologist. He diagnosed me with PMR. Put me on 15 mg. As an avid cyclist and runner I had spent 2 yrs doing nothing. I was tired and couldn't get up off the couch or out of my car without pain. In 24 hrs after taking the 15 mg of Prednizone I had my life back. I rode 33 miles that day! I've gotten down to 4 mg of Prednizone. Yes, I'd love to get off of it but I need to wait it out! I still cycle and can do anything now. I take a good multivitamin with calcium, Vit D, and others.

    I highly suggest you get off of ibuprofen, it is more dangerous than Prednizone in my eyes. I wanted my life back and got it! I was 2-3 years in pain! I'll be 62 this summer. I do more than most people my age. Other than the typical aches and pains for my age I feel great!

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