Here's where I am at. I have taken no Prednisolone for the last 4 days. I tapered from 1mg to 0.5. It has made me feel weirdly vulnerable like taking a crutch away. The odd Ibuprofen is all I need for occasional pains. However I am not in the same physical state as before PMR. I have a lot of stiffness and unable to do Pilates at the same level as 14 months ago, The skin on my legs has the appearance of poor circulation, very blotchy and thread veins and my memory is not good. I am on the no carb diet so the fat is going and my normal shape returning.
An update on my eye sight, I posted a problem with my specs prescription needing changing as I couldn't focus. This totally resolved itself after a few weeks! I did go for an eye test last week and my prescription hasn't changed and no cataract problem.
I have had no GP contact since last March , except for online prescription requests.
I am so appreciative of this site. I would love to hear others journeys once off pred and what I can expect!!
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Marigold3
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Well done - and I do hope it continues as well as so far.
It is said both by experts and former patients that it can be expected to take up to a year to recover fully from long term pred and having had PMR. The lack of fitness not only reflects the period on pred but also the effect of the PMR on muscles. Fitness doesn't return overnight - nor will it return by diving from the high board straight away - build it up slowly. I think it is Snazzy who has said she has needed to get fit enough to be able to go to the gym!
Not really. It has been one thing after the other since I stopped Pred on Aug 2020 - Long Covid for 7 months, steadily more protracted side effects with each Covid vaccine, three direct Covid contacts followed with symptoms (but negative tests), a few major stress events and winter. Add to that my usual three weekly cyclical neutropaenia which seems to trigger some inflammatory response each time and I am amazed if I can feel perky for more than a few days. Getting heartily fed up with it. It’s still only ten days from the last as we call it, Covid not Covid , after a family gathering at home set off another Covid like illness with 3 testing positive and being ill, 3 being ill but not testing positive and 2 being fine and negative. Felt great on Monday and now in a heap with sore back muscles, feeling dizzy and sick and tired. The shingles type reaction to the vaccine has at least gone. Wish you hadn’t asked?
Oh I'm so sorry - how foul. Have you seen the report about the vaccine helping some people with Long Covid but for a small percentage it makes it worse? Trust you to get the wrong version!!!Hope you feel better soon. Hugs xxxxx
I don’t wish to hijack this joyous post but rather than a straight no, I thought some context might be useful in case others were wondering what their chances were of getting back to the gym.
Gosh I’m jealous! Lucky you. My fantasy was that one day I would miraculously snap back to normal. I now realise from reading the stories of others that it is likely to take at least a year for everything to recover including the Adrenal function. Physical fitness will have slipped and there is the toll steroids take on our body and mind. We have of course been getting older alongside. It sounds like you are taking the steps needed to aid this progress in fitness. Do you think the stiffness is arthritic? I can so relate to it feeling like a crutch has been taken away, pain has trained us well. Marvellous to be free of that clever but fairly devastating drug. I long for the day when I can say I’m off it.
Well Done Marigold 💛 what a great achievement. I don’t know if you’ve ever had a Blue Steroid Card but on the back it advises you you must tell anyone treating you that you’ve been on long term Pred - Dentist included (for the first year after you have stopped taking them)If you have any Pred left just put them in the back of the cupboard for now & hopefully you’ll never need them again.
It takes time, so just increase your activity slowly....you will get there but don't rush things. Pilates is very good, have a look online for "Pilates for Seniors" to ease yourself in gently...
..not wishing to rain on your parade, but do keep your eye on the stiffness, making sure you know the difference between lack of muscular activity and reoccurrence of PMR, and also the memory issue - have you had a synacthen test to check adrenals.
They reckon it takes around a year to get over the steroids and get your adrenals in good shape. You should feel just better and better, although you are a bit older!
Hi MarigoldI have not taken pred for the past four weeks but I am still taking 10mh MTX each week. Rheumy visit early Feb and she said to stay on the 10mg MTX until I see her in six months. I'll do so for the three months until next blood test but then will see how things are going. Haven't even needed the panadol or ibiforen but now we can dance again, I'll see how I go.
Good news Marigold! I took my last half a mg of pred on 17 th January and touchwood no PMR symptoms. I also have ulcerative colitis , the pred I have taken in the last 5 years for PMR has kept it in remission, unfortunately that has now decided to flare 😢. One step forward , two back . Now waiting to see my gastro consultant.
I strongly recommend that you speak to a Doctor about being on the No- Carb diet, to put it bluntly, get off it! It’s unhealthy and causes imbalances and probably contributing to some of your symptoms. I did the Adkin’s diet many years ago purposely putting myself into Ketosis which I monitored with test strips. This was when I was a bit younger and healthy. My doctor reamed me out! He put me on a Mederatian based diet. The pounds came off slower but I felt much better. The downsides of the Zero-carb or no-carb aren’t worth the impact on your body.
Don’t take my word on it, research the side-effects of your diet, or better yet talk with a Nutritionist. You aren’t doing yourself any favors.
Thank you for your concern, but my error. I am not on No Carb but low carb diet. It is Michael Mosely's Mediterranean diet, so quite healthy I believe.
Delighted to read your news Marigold3- it is inspiring to know it is possible to get off steroids. I was diagnosed with GCA in April 2020, never having heard of the disease. After a few flares now on 3mg and hope to reduce to 2 1/2 next week all things going well. Understand your nervousness about being off steroids completely- didn't want to take them at first and now frightened to be off them....... I wish you all the very best in this stage of your recovery.
I took pred for about 2.5 years and have now been off it altogether for 2 to 3 months. No real pmr symptoms but my osteoarthritis has worsened over the last 2 years. My fitness isn't great but I'm coming up to 74! and I have big problems with my feet, so walking and exercise is limited. Good to hear your news. All the best.
Have also had a bit of complication over my cataract op recently so can’t really face foot ops as well, for now anyway….
Glad you’re off the pred, well done 👏👏x
PS Sorry, meant to say I’m on 11mg, so still a long way to go!
Hi Marigold well done I stopped pred 10 months ago I am still off it. However I am not half the man I used to be. I am far stiffer than I used to be and do not have the same fitness levels or energy. I occasionally get brain fog when tired. I have returned to former weight, lost muscle and items I used to lift with ease have become heavier!!!! My skin has thinned and shows no sign of repairing.
However its not all bad I am just beginning to restart fitness exercises, I have kept up playing golf 2/3 times a week but use an electric trolley where before I carried my clubs. I can only do about 4 hrs gardening instead of 8. I am determined to get back to cycling and running but its not an option just yet.
As the weather improves I will increase my activities. I sleep very soundly I have reduced my alcohol intake I cant drink much before I feel tired the next day. Its relevant to record I am 77 yrs so decline is expected but on the other hand I have always been exceptionally fit I played rugby to 55 years. and cycled vast distances up to 65 yrs. I suggest you plan a gradual increase in activities over 12 months in the same way we taper slowly off pred, reverse the process replace pred with exercise very gradually.
We may never regain our former abilities but some improvement can be achieved. On the days you awake with aches and pains don't panic take the odd ibuprofen and take it easy on bad days. I am finding it gradually improves hopefully I will reach an optimum level of fitness by the end of this year 18 months after ending Pred Good Luck.
Well done to you finleyfuse 😊 Seems like you’re doing really well, while staying realistic. I like the way you compare gradually increasing activity with tapering off pred👍
Here’s hoping the summer brings further improvement x
I just had to ask, are you called Marigold? That’s my name, have had so many comments over the years!!When I met my husband to be, he was in a bank hostel for young men, having been sent to London from Manchester. He was severely teased by having a girlfriend of this name!!
Well done, I’m just getting up the courage to cut down from one mg. can’t wait to be off it at long last. As you say it’s like a crutch even that small amount.
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