All these posts about tapering ,makes me wonder if it's the pred causing all the problems in the first instance,
I definitely didn't feel this bad before the pred. Surely so many patients weren't suffer as much before .appears to cause lot of problems.
Just wondering!!!
Unfortunately Pred can be a double edged sword, if you didn’t take it & couldn’t get out of bed, dress yourself, get in/out of chair, walk up or down stairs & if you had GCA you could possibly/probably go blind without treatment, l think you’ll come down on the side of it being a necessary evil.
It’s not easy, how long is it since you were diagnosed?
Kind Regards
MrsN
Mrs N ,About a month. Been struggling a bit ,started at 20mg for 2weeks last Monday dropped to 15mg aches and pains ok untill last night ,today decided to go back up to 17.5mg .
I can't see the light at the end of the tunnel .
Seem to feel down after tea every night.
Hi, l think the drop from 20mg -> 15mg might have been a too big a drop a bit too soon.
Mainly most people start on 15mg or 20mg & stay there for a month before they reduce.
Perhaps continue on 17.5mg for a month before you start to reduce.
You really need to rest & allow the Pred to do its thing, then hopefully you’ll start to feel better.
I think sometimes as the weekend approaches everything feels a bit worse & l think you really need to ‘start again’ l do hope you start to feel better soon 🌷
When are you due to see your GP again?
MrsN 🌷
I agree with you, not long enough on 20 mg Pred to reduce the inflammation. I was on 20 mg for 6 weeks and reduced to 15 mg only after my doctor did some blood work and noticed reduction in inflammation. Didn't have any problems reducing to 15 mg. My doctor allows me reduce only after the blood work shows reduction in inflammation, hence I have blood work done every 3 months or so. If no reduction in inflammation, no reduction on Pred.
It isn't likely to be too obvious yet - most people I know with GCA took 4 or 5 years to get off pred. You aren't 5 weeks into the journey yet.
You have to modify your expectations. This isn't an illness where you take a couple of weeks of medication and that's it. You are here for the long haul and it will be weeks, maybe months, before you feel significantly better. But in 6 months you will look back and say OK, it is better. And in a year you really will see how far you have come.
Too big a drop, 10% per month, so if you are on 17mg you need to drop 1.7mg per month.
You are just beginning your journey; you have to accept that you have to adjust to a new normal; at least I can drive and do what is necessary; after an active day yesterday I am exhausted today, but without Prednisone, I would not have been able to do what I got done yesterday. And I agree with Mrs. Nails that a 5 mg. drop is too much and too soon. Did your doctor tell you to do that?
We had a long thread about how doctors rush people off too quickly, or tell them to taper the dose too much. And doctors should not bully their patients to taper too much or too fast. So learn that there are times when you have to challenge your doctor. He or she is not feeling your physical and emotional pain.
I wish there was an alternative for all of us. I have horrible bruising and unsightly marks all over my arms and so do others. Although I did have 6 weeks in July and August when I felt great. My relapse was triggered by a minor injury to my shoulder; and then the other shoulder started; the only thing that helps is ice, but you can't live in ice.
I did the same as you after two weeks and went back up to 20 for another 4 after symptoms came back. I went back to 15 again then and I have been reducing my dose without problems since 🤞. I'm now on 8mg after 10 months of treatment and am now reducing every 6 weeks by 0.5mg. I seem to be lucky.
I think you are right, but I certainly understand the question. I too have wondered the same thing.
Pred was my salvation - I had 5 years of hell with PMR before pred. 15mg of pred gave me my life back.
If you think it is the pred - you can stop it and see how you get on. If all you want to do is stop you can reduce pretty quickly. But I suspect you might realise you don't feel worse on pred.
Me too!! Went for at least two years prob more with almost monthly visits to the doctors for them to blame my repeated shoulder ops and replacement for all my symptoms. My 15mg of pred gave relief of most symptoms within a few days and i dont care what anyone says about pred, it really isnt as evil as people make out and i know which life i prefer out of one without pred and one with. I think a lot of people expect an easy fix within hours and that does happen to some people but not the majority. Patience is needed still.
I feel the same. When I try to second-guess myself because I did develop diabetes after quite a few years on it, thin skin, and easy bruising. But, when I look back and remember the pain I was in and realize how much I would have lost out on life if I just laid in bed, I do appreciate being on it. Just manage the other evils that come out of it, and be gentle with yourself. Just sure that if you need any surgery, you get a surgeon who knows how to manage the surgery without repercussions because of the prednisone.
Hi lancashirelass07, I definitely felt the pmr was far worse than pred- before diagnosis I thought I was going senile with the pmr brain fog. The main problem about pred is drs and patients often try and reduce too quickly. That means you get the worse bits of pmr returning and you are still taking pred, but not enough to help so if you, get bad side effects from pred you have double the trouble. It's a game of patience. You have to let pred do its job, trying to find the lowest dose that controls the pmr.
You are ill and seem to be having the worst of pred side effects. Did you increase from 15mg to 20mg during the first week? Forgive me if i am misremembering. As I said patience is the key. A lot of people reduce quickly, flare and then have to up their pred. Often doctors tell people to reduce when they still have symptoms. That iswhy pred is seen as the problem rather than part of the solution. The other part of the solution is eating right, resting, keeping mobile and being patient. None of these are easy but you have to do them all. No sugar or other carbs beyond a few grams....some find pain and side effects of pred rise significantly when they eat carbs.
I hope you start to feel better soon. Don't forget you do have a serious illness and need to behave that way. 🌻
Personally I think you are expecting too much, too soon.
Only 3 weeks ago you posted to say you’d just started at 20mg - and that you felt rotten pre diagnosis. Since then you gone down to 15mg and back up to 17.5mg - a recipe for disaster!
You need to be on the initial dose for 3-4 weeks, sometimes longer to enable the built up inflammation to be controlled - and during that time your body also gets acclimatised to the drug. By going down quickly and then back up again, I don’t think your body has had time to get accustomed to the drug - which is maybe why you are having so many problems.
For some, the drug does act as a miracle, but you don’t seem to be one of those people, but to be brutally honest (and please don’t take offence) I’m not sure how much is due to the drug, or your expectations. You have to remember you have a serious systemic illness, and therefore you need to temper your actions and expectations accordingly.
You seem to be very stressed about everything, and that is not helping - if necessary you may need to ask your GP for help.
It’s difficult, we all know that, but for the time being you have to remain positive and give the medication a chance to work.
Totally agree with you Dorset Lady.
Our LancashireLass shouldn't reduce more than 10% every month. Poor girl is trying too hard and quickly to reduce.
Yulik
My gp made me stay on 15mg for 3 months and then take a really slow taper. Not the usual journey but it does mean i havnt had any problems. Fingers crossed it continues.
After 2 weeks at 80mg I stayed at 60mg for 8 weeks. Seemed to serve me well. Sometimes the unusual works!
Exactly! I am still on 9mg but in no rush to be pred free. My rheumy actually agreed with gp as well. I always was unusual!!!
Nothng that pred has thrown at me has put me off taking it for as long as necessary and this includes my left shin splitting like a paper bag when I fell on it because my skin has become so thin and brittle as a side effect of pred. I'll never forget the pain and stiffness of PMR fading away after I took my first dose and the horror of finding out that I might have lost my sight if I hadn't been diagnosed in time. It's a pity that the only treatment for these ailments comes with lots of potential drawbacks but, until there is something else that does the job better, I'll be grateful for what pred has done for me.
I thought of you the other day Marijo1951! How is the shin healing? Do u find wounds and cuts take longer to heal?
I had a simple burn become infected and was wondering if there is any truth to the saying that healing rates are impaired whilst on steroid treatment. I said a little prayer for you when I realised how easy it can be for something as benign as a cut or burn to take a turn for the worse!
Thanks for the kind thoughts. It is healing but very slowly. All the nurses have said that wounds heal more slowly when we're older, but steroids make it even slower. I can't wait to be free of all the wrapping, though the scar is going to be terrific. I'll tell everybody it was a shark bite, much more interesting than tripping over a door step!
A shark bite sounds so much more exciting! 😜
I'm glad to hear you are healing well albeit slowly. Better slow and steady than not at all!
Hopefully the bandages will come off to reveal a pretty little scar that will help tell your tale to family and friends.
And the lower legs and feet take the longest.
This is certainly true. The nurse at hospital commented that the skin on the shins is always very thin and delicate even without steroid medication.
By the way, I'm sorry to hear about your problem with the burn and hope that clears up soon.
Thank you Marjo1951...it is on the right track to healing nicely!
Me too.
It will get better
Before Preds I was totally dependant on others unable to care for myself or get in and out of bed.
I thought life was over.
But now nearly back to normal
I have to tell you , when I confidently walked into my first appointment with my rheumi after 2 weeks of suffering, I thought I had it all figured out. NO prednisone, as I had a relative that had had to take it many times and I knew it was a nasty drug. I was armed with a piece of paper with a new drug trial. Within 10 minutes, she had me convinced that prednisone would be my friend. Now I look back and totally agree. I’m off it now (was on for 2 years with PMR) & often when I jump out of bed, I think it wasn’t too long ago that I was in tears trying to do that! Prednisone was a miracle for me. But....you have to take your time and do this right from the beginning without being in a hurry. Your body will guide you. I learned right away (from this forum) to NEVER taper more than 10%. I think you went too fast. The rheumi explained PMR (and gca) is like a wildfire in your muscles and you must put out the initial fire before you can maintain it. Yes, you will have all kinds of weird things go on along the way....it is a powerful drug. But it is doing you more good than harm. Start over, go slow, stay at levels until you are almost pain free .... sometimes it will be 3 weeks, sometimes it will be a couple of months. And remember....the good news is you not only may recover but this weird thing that is PMR and GCA May be gone once it runs its course. Hoping that’s the case for you. Patience is a virtue! ❤️
I like the wildfire analogy. Glad you ok now🌻
Very well said, and it's always good to hear from somebody who's actually come through and now doesn't need the pred, although for most of us it does take longer than 2 years of course. Yes, I well remember the terrible struggle every morning just to get out of bed and the day after I took my first dose of pred and did it with ease...
Me too, it’s horrible feeling. X
I only have to remember that before taking pred I couldn’t press the the loo flush, or even turn the page of my newspaper for the excruciating pain. It’s quality of life at the end of the day and if it takes pred to so brilliantly take away the pain, then I don’t care! Just keep me pain free.
It was the fact I couldn't reach to toilet myself that I found so awful, as well as sitting on the loo and wondering how on earth I would manage to stand up. And I got locked in a bathroom in a "new" house because I couldn't turn the knob handle - the previous house had had lever handles and it didn't occur to me what a problem it would be until it was too late!!
Thank you all for replying ,only tapered like gp adviced. But went back to 17.5 after reading your posts.
We have almost all suffered at the behest of GPs and even if they follow the guidelines it can be too fast for many. I started at 15mg and did what the Dr said. 1mg a month. I didn't realise then that if I had symptoms I shouldn't reduce. By the time I got to 8mg I was worse than at the start...my markers were 32ish at diagnosis and at 8mg was at 54. I ended up back at 15mg 6months or so in. At least I think this all happened....it's a very murky PMR brain fogged period!
Sometimes you have to take matters into your own hands; you know your body best so if you have to raise your dose, just do it. Doctors are not gods or goddesses and for sure they don't keep up with the latest research; unless they themselves are feeling the symptoms you are, they really have no right to tell you what to do.
your comments hit home. I've been on prednisone almost a year now and while I've had steroid induced stress fractures, and am slowly reducing, there is no comparison to using or not using it to control PMR in my case. Went from 20 to 15 and pain and blood work went right back up. Now I am down to 15 again and getting ready to drop a bit next week, but went very slowly. I hate prednisone, period. But the alternative? Leflumonide is the drug we are trying to replace the pred and there are very mixed comments about doing this, so stay tuned as I journey and I'll let you all know what occurs. My rheumatologist is very well regarded here in the States and feels for me there is little choice but to get off the steroids. If this course of action fails, you will all be the first to know!
I’m sorry this is getting you down LancashireLass. The physical effects of PMR are appalling and pred seems to be the only realistic option for managing the symptoms and improving quality of life.
I think the mental effects are underestimated. It seems to me that the disease is insidious and creeps up bit by bit and is often well established by the time we seek advice and get a diagnosis. I had to work at a mental reset; as mentioned above there are two key things to get your head round, acceptance and expectations.
I had to accept its life changing in many ways and adjust activity accordingly. That’s challenging. And I had to moderate my expectations that it would all be better soon. It’s a long haul, but I try to enjoy the things I can do (particularly sitting doing nothing!).
It’s very early in your journey and all you can do is stick with it. It will get better and you can always drop by here for genuine advice and support. Best wishes.
Thanks,for understanding
Hi, your comments took me way back to when I first was diagnosed and put on pred. As someone who hates taking drugs I was dismayed at being told by my gp I'd need it about a year (!). At first I followed her guidelines-induced instruction to reduce from 15mg to 12.5 after a fortnight, then to 10 another fortnight later. I was one of the lucky ones to get the miracle relief within hours; but her plan had me yo-yoing in and out of pain until I stood firm and insisted on going really slowly.
The key for me was to acknowledge you can't go any faster than your inflammation will allow. Since then I've gone at a rate of no more than 0.5mg reduction every 5 weeks. We're all different and some find they can go faster. I've had to learn patience, and I try not to think ahead too much but take it day by day. Nearly 4 years in, I'm now tapering to 2.5mg. It's been a long haul and there have been some distressing side effects along the way (hair loss, badly damaged nails, weight gain), but without the pred I would have been virtually bedridden for all that time.
Hope you soon find some stability in controlling this horrible condition.
....The key for me was to acknowledge you can't go any faster than your inflammation will allow....
That's a good way of putting it. It stops us seeing pred as quite such a big enemy when we make that mental breakthrough. As I have heard on here....we need what we need.🌻
Thanks, for understanding.
If you would read what the pros on this site have to say, you would know more. I took the prednisone when pain in my legs was so unbearable I did not sleep for three nights. Had wonderful relief, however, the medicine brings its own discomfits and problems. That is part of life. So as we taper we have to deal with that part of the illness. It sounds like you need education about the problem,
Wow I keep hearing about all of these people taking big reductions in steroids. Even reducing by 0.5 of a milligram puts me into a big flare like right now. I'm so reluctant to go back up. I think it would be unbearable to drop by 5. Go by what your body says. And yes at times I have felt that the side effects were worse than the condition itself and then I hit a wall with my tapering and it reminds me just why I am on them. Discuss with your GP or Rheumy or the learned people on this site.
It isn't just about educating oneself, I think - I also found it quite a challenge to get my head around just how different life would be, and learn to let go of what I couldn't control. Thank goodness for the support of this site, I'm so grateful for all the advice and reassurance that's helped me to feel I'm not alone.
I understand how you feel; right now I am going through a relapse, and I am far worse than I was at diagnosis. Having said that, it is the only drug which controls symptoms. I am at the 3 year anniversary of diagnosis. and I feel worse than ever. But as Mrs. Nail's says it's a necessary evil. Other than a DMARD, there is nothing else, and they are usually taken with Prednisone. What is frustrating is that Prednisone doesn't cure the disease; it only controls the symptoms, and it doesn't always do that.
I recently read a discouraging article by Dr.Das Gupta and colleagues, a leading expert on PMR, who believes that people with PMR also have subclinical symptoms of GCA, a more risky "sister disease," that can cause irrevocable blindness , hearing loss and cardiovascular disease. He further says that a good number of patients with PMR do go on to develop GCA. So what are we to do.?
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