Good News

After 25 months and a start dose of 15mg for PMR, I managed to come off the steroids completely and six weeks on I have just been told by my GP that my CRP is very good at 1(was 56) and my plasma viscosity is normal. I am delighted to be off the steroids and feel better in myself for being off them. Inevitably I have lost muscle strength and my stamina is down. My husband estimates about 70% of what they used to be so I plan to do more walking and swimming. I have never completely lost the aches but they are slight and liveable with and the stiffness has gone. My GP reckons they are due either to weak muscles or minor strains.

My heart goes out to those who are suffering. My experience was to drop very slowly as per all the good advice on this website and take life quietly for 2 weeks after dropping to minimise withdrawal symptoms. Also to relax and avoid stress as much as possible and to find the balance between rest and exercise(difficult when I had been used to a very active life). Inevitably I had sessions of overdoing things followed by complete exhaustion particularly during the first year after diagnosis. I count myself lucky to have a good supportive GP, a helpful hubby and to be retired. I don't know how anyone could work in the early stages of PMR!

Life is so much better now and I have so much more energy and can do much more.

I wish everyone in this community better health. Thanks for all of the support and I will drop in from time to time to see how you all are.

Pat

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18 Replies

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  • Hi Patm so happy for you. I think I am in much the same position as you except I am not off steroids yet I feel as if the PMR has gone.I am slowly weaning off the steroids. Best wishes Wendy

  • Well done, PatM. I'm creeping down to 1mg and hope to be off completely in the new year.

    Stay well, Ann.

  • Hello PatM and what a wonderful bit of news from you. Very well done! So good of you to post following your remission from PMR - a big morale boost for everyone else still struggling to know that better days are definitely ahead. You may find it takes a while for those steroid-weakened muscles to build up their strength again, but they will (don't push them too hard too soon though), and walking is one of the best exercises. Do keep in touch as your experience will be so helpful especially to new members coming on board. Stay well.

  • Congratulations PatM, it's nice to hear some good news, it gives us all encouragement. I hope all goes well for you. Do keep in touch. Dorene

  • Amazing news, well done. It gives everyone hope to hear positive results. Thank you for sharing. Cheered me up no end. Good luck in all you do. Michelle

  • That's cheered me up no end. I too started on 15 mg for PMR May 2012. I am now on 2mg and get through days ok but nights can be a bit of a struggle. Yes, feel lucky to be retired as work would have been difficult...Hoping to be stereoid free by summer. Wishing you continued good health. Lesley

  • Thats awesome!! (-:

  • Your news made my day! I am so happy for you. I am only beginning my PMR/steroid journey but your news has given me hope so thanks for sharing. Wishing you a long, healthy and happy life Pat. Christine

  • Hi PatM I am so happy for you.We need to hear positive news like this to keep us going. I wish you well for the future and hope you continue to be well Cynthia x x

  • Thank you, PatM - great to hear.

  • Well done! Very best wishes for the future - take care.

  • Congratulations!! Thank you for offering encouragement to the rest of us still struggling with PMR and prednisone tapering. It helps to know it can be done!!!

  • Love to hear a good news story.... Thanks for sharing.

  • Hurrah!!! Fabulous news. What a boost to flagging spirits. I'm on the way and am exercising to bring back muscles - and they do get stronger, especially if you were reasonably fit before. But it is necessary to go carefully - I had a nasty time when I just overreached on one exercise...... Thanks so much PatM - I'm going to have a positive day! Do keep in touch, many could do with hearing of your experiences.

    Green_Girl

  • Really good, hopeful news, Pat ! Thank you so much for sharing your information. I have come way down on the steroid. Am trying the anti-inflammatory diet, which seems to help quite a bit. If I have a flare (which I have had) they increase the steroids. It is difficult, because wiwth the low dose and the diet, it seems that my adrenals start to work again. Then the high dose of prednisone and then the fatigue and Cushing's type symptoms. I have found a new rheumatologist. She is injecting the methetextrate intramuscularly. It seems to work better and I can keep the dosage of methylprednisone, low. Would like to come off this, also. She has diagnosed Raynaud's disease in my hands and feet. I am using a methyl hand lotion for both, which helps.

    Agree with your points on dealing with. Thank you for your summary, it sounds familiar. Looking forwards to working to the point you have reached. Again, so many congratulations. gives hope. thanks. best, Whittlesey, NYC

  • What a wonderful story you have. I am very happy for you.

  • Thanks for sharing your really good news. Well done PatM! I too am steroid free (still, 8 weeks) a few aches and pains but nowhere near the pre PMR diagnosis and steroid pain.

    Long may it continue. Wishing you many healthy, happy pain free days.

    My PMR journey so far has probably covered a period of about 3years from onset of pains, endless drs/hospital visits, tests and finally PMR diagnosis and steroids ............... To no more steroids and feeling fine. :-) if this whole journey/experience has taught me anything it has most definitely taught me to live life in the NOW, never take anything or anybody for granted, be grateful for the things I have, people who care for me, and for my reasonably good health. All the very, very best PatM. Lollysimp.

  • Great news, I'm so pleased for you. I hope you just get fitter and fitter.

    I like the lesson you've learned from all of this. Must remember it and add it to my lessons of "keep calm, take a deep breath and keep stress to a minimum." and "rest when tired". Not always easy with a very elderly, disabled and frail Mum who went into a Nursing Home shortly before PMR hit.

    Best wishes for a long and healthy future.

    PatM

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