Hi all, been reading boosts with interest but also sometimes with sheer horror - sorry….. I’ve been experiencing all the symptoms that most of you have described - mainly pain and severe stiffness in pelvic region, lower back and knees. Often quite debilitating. Recent bloods suggesting PMR which I’d never heard of. Been doing a lot of reading up. Unfortunately I am classed as morbidly obese and have Type 2 diabetes which I’m managing really well and have also managed to lose some weight - despite being extremely depressed of late and have to admit to often comfort eating.
My problem is the side effects of taking pred which can be weight gain, raised sugar levels and all the other issues that have been mentioned here on this forum. I’m currently adamant that I won’t take pred because of that and the negative effect it will have on my body, undoing all my hard work. In my mind, I’d like to try a good anti-inflammatory diet, along with some regular gym work to try and lose more weight and strengthen muscles in legs and back.
I currently take ibuprofen, paracetamol and codeine daily despite hating pill taking but need it to get me thru the day. I think inflammatory markers are currently around 30….
so my question is, does anyone here manage their condition without meds? Most posts are from people on pred either just starting or taking for many years.
thank you everyone, this PMR is a dreadful thing and soooo difficult to explain to anyone (especially when the pain shows itself in so many different ways and areas) so it’s been a real comfort to find you’re not alone and not going crazy!
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Barney2022
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I struggled against this for about 3 months before giving in. I tried to rest my way out of it. I tried to exercise it away. I took painkillers. I experimented with anti inflammatory diet.
It just got worse. I had to go up and downstairs sideways like a crab. I had to use manouvers for people who had recently had hip replacements to get out of bed. I had to use my arms to pull me up from sitting, even off the loo. I suspect that I gave myself a lot of injuries during this period.
Presnisolone stopped that dangerous struggle. I hate taking it but think that I had to and wonder if I would have been fitter now if I had surrendered sooner.
hi, I was over 12 stones when diagnosed, a few months later I wa# diagnosed with type 2 diabetes.
I decided I didn’t want to put more weight on from the steroids so went on a low carb high fat duet. 6 months later I had lost over 3 stones and put my diabetes into remission.
I am not saying you should do the same but I do know that without prednisolone I would not be able to work, walk or enjoy myself due to not being able to do anything.
Good luck in whatever you decide but if you want your pain levels reduced there is only one thing that will do it and that is prednisolone
It is a question that comes up every so often and I can tell you now there will be a chorus of support for pred. Nothing else deals with the inflammation that causes the symptoms. Diet doesn't, supplements don't, Most people who say they won't take pred (for whatever reason) eventually give in. If they don't, they tend to leave the forum because most of us sing the praises of pred.
I had PMR for 5 years before i was offered pred - I simply wasn't diagnosed despite repeated visits to the doctor. I will never forget that relief that arrived within 6 hours of taking the first 15mg dose - I could walk down stairs normally instead of like a toddle stomping down one step at a time. And I walked back up carrying a cup of tea - instead of putting the mug on the highest step I could reach and crawling up to it on hands and knees. I gained weight with PMR and inactivity - I didn't gain more on prednisolone, it redistributed! I DID gain with methyl prednisolone but I also had a lot of other very unpleasant side effects with it, including steroid myopathy, I then lost it again by cutting carbs drastically. My Hba1c has never risen - most recently it was 36. Over time I became more and more disabled and almost housebound - and depressed as well because of he constant pain,
If that battery of painkillers is helping it does suggest that there may be something other tha PMR going on, painkillers almost never help. On the other hand - they all have their own adverse effects when used long term and some are worse than pred. One lady took 3 doses of ibuprofen and ended up in the ED with a gastric bleed. PMR rarely burns out in under 2 years, whatever some doctors try to claim- I wouldn't consider taking that cocktail for the 4 or 5 years that is much more common - and half of patients need some pred for far longer than that.
It isn't as simple as pred bad, no pred good. Inadequately managed PMR is more likely to progress to GCA, If you develop GCA it is a stark choice: high dose pred (far far more than used in PMR) or risk total and irreversible loss of vision.
I was undiagnosed with GCA for 18 months, and tried all kinds of painkillers, so many towards the end I kept a diary to make sure I didn't overdose...and 3 steroid injections into my "supposedly" frozen shoulder, nothing worked.
As PMRpro has said, untreated can lead to its much bigger, nastier sister - not something you would want with doses starting between 40mg and 80mg (in my case because of sight loss)... compared to that 15mg is manageable...
No one WANTS to take steroids, but the painkillers you are taking can have their own issues, they aren't sweeties....
I appreciate you don't want to put on weight nor make your diabetes worse, and you don't necessarily... you just have to cut carbs as already advised. As for exercise, probably easier to achieve if you are on Pred rather than being in constant pain without it.
But at the end of the day, it's your body and your choice...so good luck in whatever you decide.
Hi Barney. I totally hear you, and think many on here do too. But sadly prednisolone is likely the only thing that will help you. I too worried about weight gain having had an underactive thyroid in my early 20s and so weight gain was all I could think about. I went on a low carb diet from the start and have not gained any weight. I am certainly a different shape, and have lost muscle mass, but the scales remain the same.
It is doable, but it takes a lot of willpower to say no to the bread, rice pasta and for me potatoes.
I order low carb bread (which really isn't anything like bread ) so that I can take my own food with me on the days I work (80% reduced since diagnosis) and the odd sweet treat, now some of those are really good, others vile. I make a lot of vegetable soup (in a soup maker) so that if I do feel hungry I fill myself up with that. And drink plenty of water, that can make you full too.
You've done well to try and avoid it up to now, but I think if you started you will look back and see how much awful pain you were in and understand all the people on here with their views on how much it helps them. But know, that they all would most likely prefer not to take it.
Hi Barney, I am very sorry to hear of your symptoms which do sound like PMR.
I would suggest you make sure the diagnosis is correct, so if you can ask for a PET CT that would be the most reliable diagnostic approach.
All things you want to do to help yourself, diet, exercise etc, are good and valid. The issue is whether you may be in too much pain and have energy to do them. The threat of GCA is real and we all live with it.
If you do decide to take steroids, make sure you do everything you can to neutralise any adverse side effects and have faith in the process. Most people do get better. Good luck.
thanks so much for your honesty and helpful responses. I’m guessing I’ll need to make the decision at some point but it’s been really good to know that most of you have been down this same path of trying self-help first. It’s also good to know of the risks is GCA developing which is another vital thing to factor into the thought process.
As the others have pointed out steroids are the only thing that will help PMR. Other painkillers are usually pretty useless. This us a good opportunity to start taking an interest in nutrition. I became a nutrition guru and probably bored everyone rigid. Also there is no way I would have gone to the gym initially, although I do go swimming which I love. Remember you have an illness so you need to look after yourself.
I hear you! I was obese, inactive and had high blood pressure when I was diagnosed (after 5.5 months of worsening PMR symptoms). And despite being wheeled into my GP’s office in a wheelchair the day he diagnosed me, I was adamant that I would not take steroids. After 20 minutes of discussion with my GP and husband I reluctantly agreed to try a trial pack of pred. I’m so glad I did!
Once the pain and inflammation were managed I could return to my “new normal”. I adopted a low carb/sugar/salt eating plan, discovered deep water exercises, and managed to lose 35 pounds and keep it if for over 4 years now. I was able to get off high blood pressure medication, and have adopted a more balanced lifestyle (activity, rest, nutrition, social connections).
Not everyone gets all the side effects. I had mood swings at starting dose (20mg), and still have thin skin, shedding hair and sweating in the early hours of the morning. Frequent urination happens too. All are manageable, living with PMR pre-diagnosis was not!
Pred is the standard for management and treatment for PMR. Sometimes other medications are on-boarded to help patients taper off pred. My daughter is a nutritionist and explained that an anti-inflammatory diet can help, but not to the extent pred can (of course the diet would be without any side effects likely). That doesn’t mean your diet counts for nothing….the eating plan she did up for me certainly helped my overall health.
It is certainly difficult when we have to make decisions for our personal health. You have many things to consider, and walking the line of pred and the accompanying relief that allows for quality of life, with the potential side effects is not always easy. You will never truly know what pred can offer unless you try it. Only then will you also discover any negative side effects too.
I wish you all the best. We in this forum “get it”. Post again if you have questions or concerns.
There are steroid sparing drugs such as Methotrexate but generally people start with Prednisolone as Prednisolone gives immediate relief whereas Methotrexate for example can take up to three months to have an effect. The idea with Methotrexate is that you will taper the Prednisolone and will eventually be off it altogether but it seems that many people have to continue taking both.
As others have said, trying to manage your PMR without medication would be extremely difficult. This is not a short-term illness and exercising will be very hard when you are stiff and in pain. If you can't do much and are feeling miserable there is a danger of comfort eating although I personally lost my appetite and so lost weight before I was diagnosed.
I was worried like you, for similar reasons. After 2+ years of pred, which successfully controls my PMR, I weigh (slightly) less than I did when I started: without having to dramatically change my eating patterns. Others wiser than me may correct me, but I think one of the reasons people put on weight when taking steroids is that it increases their appetite. As someone who already controls their eating, you will be used to being suspicious of urges to eat too much, which could actually be an advantage; that’s what I found, anyhow. Good luck, and I wish you relief from your pain and discomfort.
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