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

Back to square one

Posted , 15 users are following.

elizabeth40672
elizabeth40672

After seeming to get somewhere with this at the beginning of the year I now feel as sore as I did right back at the beginning of this journey in 2016 and I am now 51. As a recap - First the doctor said it was Polymyalgia and put me on steriods where I got relief to about 80% of my pain. Then the Rhumy disagreed and decided I has Axiel Spondoloropthy (sorry for spelling) as I was to young for PM and said because of my diagnosis of Oestoperosis that I had to come off the steriods and put me on humiura. I was slowly reducing the steriod and on the humiura and was doing well. Then I went away on holiday to New Zealand this February. It was fabulous but all my medication went to pot and I have not been good since. I changed Rhumy due to change of address and he now says that he does not think the diagognosis of AS is right and now insisting I get off the steriods completely, currently I am on 3mg, and has moved me onto Simponi which is injected once a month and may take 12 weeks to kick in. I take my 3rd injection on Saturday.

Where I am at now. I am in constant pain in my shoulders, which runs down my arms with certain movements. I find it difficult to put on my clothes or tie my hair up. My neck and upper back are painful too. My hips are in a bad way and it hurts to walk up the stairs or to crouch down. Sleeping is only on my back as any other position really hurts. I take co-codamol to help me get to sleep, I don't think it helps the pain it just relaxes me so I can drift off. I do get to sleep and often wake in the night but try to go back to bed but if I move I wake in pain. When I am up and moving is better and I work which does take my mind off it a little.

Ok so what is my question. I need to get my quality of life back but don't know what to do about it. I am waiting to see the Rhumy again I hope in September where I think I will be telling him that Simponi does not work. He will then try me on something else that may take 12 weeks to work, am I just supposed to put up with this pain for another 12 weeks and on, whilst we go through all the different drugs? What if it is PM and steriods are the only solution? How can I prove this? If you were going to be sitting in front of the Rhumy soon what would you be saying?

I know there are lots of you out there who are much worse than me and I thank you in advance for your support.

0 likes, 54 replies

54 Replies

Prev
  • patti52108
    patti52108 elizabeth40672

    Posted

    Hello,I am going into my 4th year with pmr and I have been on pred and weaned off more times than I remember. I am a young active 60. I am currently off pred. and my sed rate and crp are going up every mth. They are in high normal range but I have all the neck, shoulder, upper arm, hip, and thigh pain that pmr causes me. Dr knows I need to get off of pred. because it has already given me osteoporosis. Keeps telling my labs are normal as I watch them creep up and suffer the symptoms. Guess I'll have to wait til end Sept. to plead my case AGAIN. So tierd of hearing its arthritis as I see and feel my immflamation increase. Scared and tierd off this roller coaster.

    • Anhaga
      Anhaga patti52108

      Posted

      Do as I suggested to Elizabeth, google healthunlocked my osteoporosis journey for some ideas on how to improve bone density while on pred.

  • patti52108
    patti52108 elizabeth40672

    Posted

    Sorry, forgot to wish you luck. Comforting to talk to others that know what it is and NO its not athritis or sleeping wrong. I have been through this soooooo many times.

  • elizabeth40672
    elizabeth40672

    Posted

    I just wanted to give you an update. I am feeling so much better! I did 4 days on 15mg as suggested by doctor, and got 40% relief, went up to 20mg for another 4 days and the relief was about 80%, hips and legs began to feel almost normal so I did 5 days at 25mg and now only have a sore shoulder on one side. Mobility of my shoulders is still not great but not in constant pain. I have come back down to 20mg to see what happens and am still ok 4 days in.

    This is where I need your help. What do I do next? Do I stay at 20mg or jump to 17.5mg and then 15mg or do I start trying to get slowly back to 15mg...

    Thanks as always!

    Elizabeth

Back to top
Prev

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.