PMR treatment without steroids
Posted , 19 users are following.
Hello, I'm new. I'm pretty sure I have PMR and have a GP appointment today. I have all the symptoms and my blood results have come back abnormal.
I really do not want steroids! The side effects sound horrendous, but the main issues are: I spent the best part of last year losing weight and eventually lost over 20 pounds. This helped with my chronic mental health problems which I have struggled with for most of my life. I had a relapse over Christmas and new year, but have improved again. I fear that pred and weight gain will throw me into another vicious cycle of depression and weight gain.
I am also terrified of osteoporosis as my friend died from it a couple of years ago.
Would steroid shots avoid any of these problems or could I try to manage with strong NSAIDS? I'm already feeling 'delicate' and vulnerable and I've not even been prescribed anything. Can I refuse daily toxins (pred) in the hope of avoiding the misery that has plagued my life?
0 likes, 112 replies
Pym pansy57
Posted
Hello,
ive had PMR for 18 months. Like you i was suspicious of steroids, but they have not been as bad as i thought. All my research suggests you can't really control this thing without them.
Proper diet helps and i'm a great supporter of trying to keep doing dome modest exercise. I also find yoga useful.
I don't like the word processor on this site. I've got so used to auto-correct.
Have a look at the PMR thread on the Health Unlocked website. Just Googling it should help
THETE's (Grrrr) lots of information there that might help you.
Pym
mary19068 pansy57
Posted
Hi pansy57
I was on Prednisolone for approx 2 years and did suffer many side effects. I am now off them and have been left with cataracts and and shoulder bursitis which is an integral part of PMR.
I look back and think maybe i could have tried NSAIDs first and painkillers before going onto steroids. My doctor did not volunteer info about Prednisolone side effects. In my opinion, and this may not be everyones opinion, but i felt the side effects were more troublesome than the pain of PMR.
Perhaps ask your doctor/rheumatologist if you can try an NSAID such as Naproxen. If you do take NSAIDSs be sure to eat when you take them as they can cause stomach problems. See how you get on with NSAIDs...
best wishes...
karenjaninaz mary19068
Posted
MARY, I tried all that before I WAS even diagnosed . I am a retired nurse anesthetist and thought I Could figure it out by myself. I took naprosyn and had the hips treated with steroid injections; then my shoulders started and had those steroid injected. My pain doc suggested I might have an inflammatory disorder and suggested curcumin which Itried for a month- no help meanwhile I FELT VERY ill. I developed a low grade fever, lost weight, became anemic and had so much pain all simple activities like dressing and even putting on the car seatbelt needed my husband's help. I went to a physiatrist who prescribed PT for the hips; it made it worse. I started to look up my symptoms and realized I might have PmR. WENT to my family practice doc who pressed on various painful areas announcing I HAD FIBROMYALGIA"! I finally self referred to a rheumatologist who after exam prescribed 15 mg of pred - a miracle drug.
I do have hip osteoporosis but I think those multiple hip injections helped that plus I am 76.
When I hear people say no pred because of side effects would they refuse chemo for cancer because of side effects if quality of life was the result? By the way long term use of nsaids damages the kidneys. PPIs cintribute to osteoporosis but no one refuses those for that reason.
EileenH karenjaninaz
Posted
It is a matter of amazement to me that so many doctors and patients live under the delusion that long term use of NSAIDs is safer than corticosteroids. If NSAIDs worked for PMR I could perhaps understand it but they rarely even take the edge of the pain and do nothing for the stiffness. They are also very unlikely to prevent PMR progressing to GCA if it is going to happen. Surely lower dose pred is preferable to the very high doses that are required in GCA to prevent loss of sight?
mary19068 karenjaninaz
Posted
Hi karenjaninaz
I wish i could have tried NSAIDs initially they may have worked for me, because i suffered many side effects with preds which made me far more ill than the pain of PMR. I agree we are not all the same.
I have been using Naproxen now for over a year and i have had no problems. I take 250 mg 3 x day for shoulder bursitis in both shoulders and they work well with the pain of the inflamed bursers. I take them with meals, i eat half the meal then take the Naproxen then finish the meal, sandwich the Naproxen .
I was just making a suggestion to pansy57 to try NSAIDs first and see how she got along with them...her post did indicate suggestions....
ptolemy mary19068
Posted
If NSAIDs work it is not the PMR they are really helping but something else. If I were given the option of pred or Naproxen I would definitely choose pred.
EileenH mary19068
Posted
On the other hand - a couple of steroid injections might have sorted the bursitis for months, even years.
mary19068 EileenH
Posted
Hi EileenH
Yes, i have had bursitis for almost 2 years the length of time i have been off pred and have cortisone injections from time to time..can only have 3 a year. They wear off after approx 5-6 weeks then it's back to Naproxen. However, i have now been referred to Orthopaedics for ops on both shoulders....
mary19068 ptolemy
Posted
Hi ptolemy
I wasn't given the option i was put straight in pred. What i'm saying is i would have liked to have tried NSAIDs first...
ptolemy mary19068
Posted
Pred is for PMR and NSAIDs are for other types of pain. If you had been diagnosed with PMR a doctor would have given you pred. It is like you would not have been given cough medicine for PMR it is the wrong medicine.
mary19068 ptolemy
Posted
Hi ptolemy
I guess we'll never know if NSAIDs would have worked since i wasn't given the option to try them initially. As i said they may have worked for me because they are anti-inflammatories, isn't that what PMR is an inflammatory disease. Certainly worked for shoulder bursitis which is inflammatory also and an integral part of PMR.
NSAIDs = Non-Steroidal Anti -Inflammotory Drugs.....
EileenH mary19068
Posted
Yes, PMR is an inflammatory disease - but usually so much inflammation is caused that any NSAID effect is overwhelmed. They may work for very mild cases and possibly take the edge off the pain but I have yet to meet anyone who could tolerate the dose required for the years PMR lasts. NSAIDs of all sorts have potentially nasty effects of cardiovascular and renal systems.
mary19068 EileenH
Posted
Hi EileenH
You have to be very careful how you take them. My doctor who is male takes them and says if they are taken properly i.e. with lots of food not just a biscuit or piece of cake and worse with nothing at all then asking for trouble. I took my doctors advice and i am fine with them. This is a new doctor not the one who prescribed preds. Wish new doctor had been around two years ago.....
EileenH mary19068
Posted
For your stomach maybe - it's the other bits that worry me as well!
mary19068 EileenH
Posted
Hi EileenH
Never had a prob with stomach on NSAIDs, but did with pred. I have regular cardiovascular checks and kidney checks due to Type 2 diabetes. All fine. I think if you do use NSAIDs be sure to eat plenty when taking them and have regular CV and kidney checks...
EileenH mary19068
Posted
We're looking at 10, 15, 20 years down the line. And I have had PMR for a long time ...
mary19068 EileenH
Posted
Hi EileenH
Yes granted!...but regular checks if taking NSAIDs would be the order of the day for those who do not have PMR for a long length of time. In your case and others who have been dealing with PMR for many, many years NSAIDs may not be appropriate. Any patient with GCA then pred is a must to preserve their eyesight..
The point i have been trying to make, I may not have been explaining myself properly but i am of the opinion, my opinion that is, and it seems of others, that PMR patients should be made aware of the adverse side effects of pred by their doctors or rheumys and be given the option of trying NSAIDs if 'they want to'. It's freedom of choice which we should be given. If NSAIDs do not regulate PMR pain for the patient, then try pred .
I just wish i had been given that choice. Maybe i would not have suffered, and it was sufference, with a multitude of side effects. I would rather have dealt with PMR pain. The memory of the side effects is first on my list that goes down in the anals of yuk memories.
I'm just being honest about 'MY' experience with pred. I am not trying to persuade or dissuade anyone from using pred or NSAIDs, it's an individual choice. I'm merely giving my experience albeit it is not everyones experience.....
EileenH mary19068
Posted
But you do not know how long it will last. There is no way of predicting it at all.
Believe me, most doctors DO make a big thing about the possible side effects of pred and attempt to get the patient off pred quickly, often using NSAIDs. Most patients HAVE tried NSAIDs before ending up at the GP with PMR symptoms.
mary19068 EileenH
Posted
Hi EileenH
Granted you don't know how long it will last. I that case if it goes on longer than 2 years, and NSAIDs are not helping with the pain, or causing adverse effects,then go on to pred. It's trial an error what works for some doesn't work for others.
In my case i was determined to get off pred pain or no pain,.but that was MY modus operandi. It worked for me, not everyones choice. I suffered with a lot of withdrawal symptons buy hey! will soon be completely free of pain after my shoulder bursitis ops.....the bursers will be removed, but there is slight chance they could grow back but not necessarily swell and cause anymore pain..
I wont feel normal without pain, but hey! will work on it...😀🤗
EileenH mary19068
Posted
You have to remember that large numbers of PMR patients simply cannot function at all - I know people confined to bed, in a wheelchair, without pred. If you like being unable to toilet yourself, struggle to dress yourself and the like - you are welcome. Been there, done that - and I never want to go there again.
And however much you may dislike pred, leaving unmanaged inflammation rampaging through your body predisposes you to increased risks of arterial damage, peripheral arterial disease, cardiovascular disease and even some cancers. Pred does provide some protection against those.
mary19068 EileenH
Posted
Hi EileenH
I really do understand and agree all that you say. PMR can be horrendous for a lot of people. My pain was bad and i couldn't function properly with day to day tasks..it was horrible!😣 so was pred side effects! i had the worst of both worlds. I do feel for those patients especially the GCA patients. All i wish i could have just tried NSAIDs. I was looking forward to an active retirement travel etc., but PMR and pred side effects held me back for 2-3 years,but it's not too late i look ahead to after ny ops to brighter and better days doing the things planned in my retirement.
You sound ok to be still on pred, well that's ok if your happy, but do you ever wonder what would happen to your body if you were to taper off them now at this stage now your body has become so used to them over the years?...or perhaps you don't think of it and just carry on with your day to day life?
Thanks for the chats very enlightening. I hope maybe someday you will be pred free if that is your hope....👍
EileenH mary19068
Posted
It isn't an option yet - the PMR is still very active and if I reduce the dose I get severe atrial fibrillation. But if I have to take a low dose of pred for the rest of my life that's fine. It is no different taking 7mg as a cortisol replacement therapy than taking thyroxine because your thyroid function is gone. With pred I can get on with life. Without it I can't. That's fine.
mary19068 EileenH
Posted
👍😊