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

Lyrica

Posted , 6 users are following.

Guest
Guest

I have had PMR since August 2006 and started on 15 mgs of Prednisone. I have tried to reduce the dosage twice, 1 mg reduction monthly and each time I have got down to 9/10 mgs the symptoms have come back and I gone back up to 15 mgs. The last occasion, the increase did not get my symptons under control. My rheumotologist has now put me on Lyrica, 100 mgs per day increasing to 150 mgs, reducing the Predinisone by 1 mg per week. So far this seems to be working really well.It is is the first prescripton drug made available for Fibromyalgia. And treats nerve pain. But seems to be working on the PMR, the symptons of which seemed to be crossing over to Fibromyalgia.

Wonder if anyone else has any experience of this drug?

1 like, 9 replies

9 Replies

  • Pammy
    Pammy

    Posted

    Janet, good to hear you've found something that works. I have not heard of Lyrica before but I will certainly be asking my rheumatologist about it asap. I was wondering how long you'd been taking it and by how much have you reduced your daily steroid dose during this time?

    Thanks for the info, good luck and please keep us informed of your progress

    smile

  • Guest
    Guest

    Posted

    I am now down to 11 mg so it is still early days. But the Lyrica seems to be working. When I was on 15 mg and no Lyrica I was having to take 2400 mgs of Ibrobufen as well. Now I am virtually pain free and no pain killers. I saw my Rheumatolgist yesterday and the plan is that I will come down by 1mg every two weeks until I get to 8mg. At that time he wants me to come down by 1mg per month. I am currently on 150 mgs of Lyrica and I can then increase to 225 if I need to. And then higher but he hopes that won't be necessary. Obviously there may be changes along the way!

    Hope this is helpful.

    Good wishes to everyone out there!

    Janet

  • michael24040
    michael24040 Guest

    Posted

    I was diagnosed with fibro myalgia in Feb 2018. I was prescribed prednisone starting with 40 mg per day reducing monthly to 5 mg/ day. After finishing with the steroids the problems were the same as in February. My consultant put me back on prednisone again 15mg/day until mid December.

    I am very glad to see a new drug Lyrica is available as prednisone hasn't worked for me i.e. When I go off the steroid I still in extreme pain.

    Does Lyrica work without using steroids?

    is there any side effects with Lyrica.

     

    • BillyP
      BillyP michael24040

      Posted

      Michael...............

      ​I have  PMR , and have been on pred for about 16 yeas now..........

      I had never heard of Lyrica until recently when a cyst in the lower spine started pressing on 

      my sciatic nerve giving me terrible pain in the lower back and right leg......

      My Doc prescribed Lyrica for the nerve pain..........FOR ME.........the cure was worse than the disease.

      ​First dose seen me in bed for a couple of days........each progressive dose was the same........

      ​I got to 300mg twice daily and thought this is not for me so decided to reduce the dose (Doc said no 

      problems there ) BUT there was.......... took a month or so to get off it a little at a time.........

      That was the worst month of my life ......headaches ...sick as a dog........generally unwell.

      But that was for ME........others may be different...........

      ​I am no expert , but I cannot see it as a replacement for pred. It is a nerve blocker.......

      I would do some thorough  checking before I would be using it.............

    • michael24040
      michael24040 BillyP

      Posted

      Billy,

      thanks a mill for outlining your experience in such detail.

      Lyrica is not for me based on your experience.

      Interesting that you are on the Pred with no side effects, have you ever tried come off it during the 16 years and what was the result if you did come off Predict. I have changed my eating habits recently, off all dairy products, tea, coffee, pasta, and sugar. My new policy is if it's in a box in the shop it's processed, leave it there. Preparing mostly boiled dinners using organic vegetables when available.

      im not completely pain free but it's reduced the severity big time. I feel I'm illergic to some food, it's just to pin it down now. I'm seeing a nutritionalist tomorrow to get a second opinion.

      Thanks again

      Michael Collins 

       

    • BillyP
      BillyP michael24040

      Posted

      Michael...as I said,  that was my experience ....others may be totally different..........

      ?I have tried a lot to get off pred ...soon as I get below 5mg things go pear shape.....

      ?Tried MTX and a few of those associated things......all made me sick in the tummy.

      ?At times things don't go according to plan and I get a flare up from some trauma,

      the thing to do is to be able to recognize a potential flare, I then just double my pred dose for

      no longer than 4 days then back to the 5 mg daily morning dose, that usually settles things down.

      On the earlier  higher doses ,   I used to get moon face and put on a bit of weight.,but I always 

      ?have been a stickler for exercise so that  helps with the weight bit.....

      ?I have taken Fozzamax for years and my bone density is good..........

      The only other side effect that I am aware of is.....severe bruising with skin being knocked off

      on a regular basis then taking a long time to heal.

      As for food I try to mostly keep away from processed stuff (but break out occasionally)

      For me...sugar...that is processed sugar.......is definitely a no no .....Fruits don't seem to

      be a problem as some others say............

      ?So biscuits...cake ..etc is an occasional treat..........

      ?I keep off dairy  only because I am lactose intolerant  , for me it wasn't a PMR problem while I was 

      ?on dairy. ( used to feel crook in the tummy with pains like IBS for 40 years then a smart Doc said

      you may be lactose intolerant )....... hooray..... that fixed that.

      My aim is to remain below the bodies 7mg production (or there abouts) so my adrenalin

      glands are working in case of an emergency.....

      ?So if all is ok on 5mg daily...then I am happy with that for the rest of my life..........

      That is just my opinion................

    • BillyP
      BillyP michael24040

      Posted

      Well,.... I will be a monkeys uncle.....after all this time I have only just realized Prednisone contains lactose....I am lactose intolerant..........if I have a glass of ordinary milk its not long before I bring it back up...........

      ?I don't think the pred affects me in any way  but  who knows....???

      I shall have to think about that.........!!!!!

      Maybe there is not enough contained in the tabs to effect me............!!!!!!!

      I wonder if there is a lactose free version.........?????

  • Fizzyjam
    Fizzyjam Guest

    Posted

    I haven’t had experience of Lyrica,but have had an almost miraculous experience after consulting a nutritionalist and starting a low Histimine diet..I have at last been able to continue reducing my prednisolone.Has anyone else had experience of a low Histimine diet?

    I have had PMR since Oct 2016,my rheumatologist started me at 15 mg,with no effect at all,followed by a huge reaction to Allendronic Acid,he changed me to Residronate and increased my pred up to 30mg.

    I had been reducing per month,and hit a barrier at 7mg and a flare up in September last year.Since I started the diet in November,the pain disappeared almost immediately,I haven’t had pain since.

    I cautiously reduced by half a mg in December,and this last week again by half a mg..so far no side effects at all. Although weight was a secondary consideration as pain was severe,I also have lost all my ‘steroid’ weight,and no longer have a puffy face. 

  • jhawk
    jhawk Guest

    Posted

    i use both prendisone and lyrica. i am up to 600 mg lyrica. i am at 15 mg prendisone. i dont want to be on prendisone because of the damage it does to your bones so i am electing to take the pain and reduce prendisone i will probably start methotrexate soon i had a good result with my RA and methotrexate .

Back to top

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.