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New to Forum. Question about medication and diet

Posted , 8 users are following.

CeeJay30
CeeJay30

I was diagnosed with PMR in August 2013 (at age 64).  The pain came on quickly both in hip area and shoulders.  Had high inflammation in blood test.  My GP sent me to Rheumatologist but had to wait for months for appointment....But, he diagnosed it immediately.   Anyway, started with 20mg of pred.  Worked down to 10 mg very quickly and then slowly over the last year have gotten to 7mg where I have been for more than six months.  I was on Methotrexate  for awhile but had severe palpitations and headaches.  Rheum stopped that.  Two months ago, he started me on Hydroxychloroquine to aid in reducing the pred.  I had severe diarrhea so I've stopped.   In general, I feel okay and Rheum has tried to tell me not to worry too much.   But, he is trying to work with me on getting pred. down.

I am so thankful that I have found this forum.    I just, today, started the slow reduction process suggested in this forum.  But, I'm cutting it to 6.5 (from 7) instead of a whole mg. (ie one day low, six days reg dose, etc.).

 

Anyway, I wish input on these side medications and how helpful they may have been for others.  Other than side effects, do they help?

And, I have also been trying to follow an "anti-inflammatory" diet.   When I do that carefully, I think I feel better.   But, not quite sure its the diet or just the pred working very well.   Does anyone have experience with this type of diet?  The Rheum has no "information" on whether this helps PMR symptoms.  But, he says its healthly, so can't hurt.

Thank you all for being here.   So helpful.

3 likes, 51 replies

51 Replies

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  • paula63201
    paula63201 CeeJay30

    Posted

    Hi there Ceejay,

    I got PMR September 2013, got diagnosed that December and put on 20mgs Prednisone. Now at 7.5 (had some hiccups, such as a virus, so rheumy had me go on 15 for 5 days, 10 for 3 and tomorrow back to 7.5). Will start reduing again after February 13, basically using the same formula you are.

    I never took Methotrexate or any of the other meds to reduce faster. I am taking Prednisone, Pantoprazole 40 mgs for stomach, Gabapentin 300 mg at night. I am also taking HRT (Estrogen). I started the Gabpentin when I was misdiagnosed with Fibromyalgia, but the new Rheumy had me stay on it as it helps me go to sleep and at this level of Prednisone, I sleep well.

    In terms of anti-inflammatory diet: I started this when my syptoms first showed up and before I was diagnosed. I continue on this diet. Because I have been on this diet for so long, I don't know to what extent is is helping or not helping at this point. I am not going off the diet to check, though. I have some of Andrew Weil's (nutritionis, Harvard educated MD), books and he describes the diet in his books. According to him:

    Avoid all fats that are hydrogenated, such as margarine, also safflower and corn oil should also be avoided; they are polyunsaturated and promote inflammation and contain trans-fatty acids.

    Eat more fruits and vegetables.

    Eat olive oil. You can also have some butter (in small quantities, rather than margarine). 

    Eat lots of fatty fish: salmon, sardines, mackerel, herring. These and the oilve oil contain essental fatty acids that retard inlammation.

    Take a fish oil capsule.

    Add ginger and turmeric (curcumin is what the extract is called. 400-600 mg 3 x daily) to your diet. There are ginger capsules, also that can be purchased.

    I drink ginger tea and pretty much stick to the diet. I have not used the turmeric.

    I feel well, although experienced some fatigue as I reduced to 7.5.

    I have also had acupuncture, which helps me.

    Is your diet similar?

    All the best to you!

    Paula

     

    • CeeJay30
      CeeJay30 paula63201

      Posted

      Thank you, too, for such great information.  It really supports what I'm trying to do.   You might want to read my response to MrsO to see my routine.     Any thoughts you have would be highly appreciated.  I do like the idea of fish oil capsules...
    • EileenH
      EileenH CeeJay30

      Posted

      I have tried fish oil capsules - and had to stop! It didn't matter which sort, the taste repeated on me all day and I couldn't stand it. redface
  • david60752
    david60752 CeeJay30

    Posted

    Hi, I have changed my eating habits alot, eating a lot of fresh vegetables and fruit and eat a fair amount of fish. I have not noticed any difference based on what I eat, although I admit I also do not exclude other things from my diet. I also tried Hydroexychoroquine for two months along with just about every over the counter drug there is. Nothing helps me except prednisone. I am very concerned about long term side effects of the prednisone. I am presently on 7 mg and still feeling symptoms. I would need to be on 10mg to have no symptoms. I cannot take calcium suppliments as that has caused me kidney stones. I have been dealing with this for 7 years.. Good luck, David
    • tina-uk_cwall
      tina-uk_cwall david60752

      Posted

      David, if you do take calcium you really need to take magnesium too. Also, we all want yo get off prednisone but our condition will burn out as and when it's ready and not before. I'm sorry but if you are still in pain at 7 mgs then you really need to up your dose because what that is telling you is that the condition is still flaring away at a higher level than the prednisone is able to bring it under control. What is the point of still suffering all the pain of PMR and the side effects of pred. You're better off being in no pain and still suffering the side effects of pred. Sorry david but I really do think you need to up the dose. Have you tried 8 mgs? Christina 
    • david60752
      david60752 tina-uk_cwall

      Posted

      I will try 8 starting today and see if that makes a difference. A few weeks ago I had alot going on and actually forgot my meds for two days, I thought I wasn't going to be able to move. I will never let that happen again. I actually went to 10 for a couple of days and after that I felt like a new person. The first time this happened to me the only way I could seem to cut back was go to the point where I could manage the pain, after a few weeks when things seemed okay, I would cut again. This time I will try the gradual one half mg a week.
    • EileenH
      EileenH david60752

      Posted

      Funny you should say that. I had managed to get down to 3mg and was feeling good except for a bit of arm cramp that wouldn't shift. I went back to 4mg and it went. Then I had a touch of bursitis in my hip and the GP gave me a cortisone shot - which almost sorted it, but not quite. I thought I'd see if a couple of days of 5mg would help finish it off - it did, but I also feel so much better. I didn't think I felt ill - but I was a bit tired. After a few days of 5mg I feel SO much better...
    • david60752
      david60752 EileenH

      Posted

      Since I am new to this chat group and not very computer savy, can someone tell me what the points and badges mean that the site tells me I have earned?
    • EileenH
      EileenH david60752

      Posted

      This site used to be sensible and merely a forum amongst information pages - then it was decided to revamp it a few years ago and they got in a company who made it pretty well impossible to use for the best part of a year, so losing many of the regulars. Mercifully, it has recovered.

      Last year they decided to tart it up a bit further - and added in the stupid points and badges concept. You are awarded points for doing particular things, like starting a thread, answering a post, being the first to answer a post and so on and so on. You get points whatever you say - even if it is "LOL"! Or making a really useless comment (I don't count LOL as really useless). So the more someone posts, the more forums they join - the more likely they are to achieve "stardom". It has little to do with real expertise - I am a "guru" (or something) on the basis of my responses on this forum alone. Some people have achieved that by joining 20 different forums

      I understand it is a trend from other chatrooms. I have no idea WHY you would want to collect such awards - but it seems people do and some even become quite competitive about it rolleyes  I also view it as downright misleading - newcomers might see a post from someone who has a high score but who knows absolutely nothing about the subject in hand and believe what has been said. That is why I always refute a post with rubbish in it - I believe in calling a particular agricultural implement a spade. I have upset one or two trolls in that way. 

      I think (not sure as I take no interest in it at all, it just happened) that it is possible to opt out of the silly emails bunging up your mailbox. No idea how though!

    • Mrs_CJ
      Mrs_CJ EileenH

      Posted

      Regarding the emails you get, you can control this. Sign in and then go into My Account, click on  "Manage forums emails preference", and then you will see a list of email options. One is about getting emails for badges.  Just tick the boxes for the type of emails you want and untick the boxes for the ones you don't.   Easy peasy!
    • david60752
      david60752 Mrs_CJ

      Posted

      Thank you both, I am not interested in anything except learning as much as I can about this condition and overcoming it. Since I have been in contact with everyone on this site it has got me to thinking about trying to eventually getting in contact with people in my area and maybe getting together every now and then to talk things over.
    • EileenH
      EileenH david60752

      Posted

      Contact the national PMRGCAUK charity and ask if there is a support group in your area. They should be helping people to set them up, including some financial help, and will know if there are other members in your area. While each individual person may not feel up to it, if a few of you get together it is easier.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey david60752

      Posted

      David, I believe you're in the US, in which case PMRGCAuk won't be able to help with regard to support groups on your side of the pond.  In fact, I've never heard anyone in the US mention finding a PMR support group there - perhaps you might be lucky and someone will post who is from the same part of the US as you and you can start one going between you!  Meanwhile, this is an excellent group supporting each other, albeit virtual, and you will find another couple of great virtual ones in the links on the home page of this discussion group.
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