Hi a question ..... am i being daft ? I was diagnosed with fm in 2011 bit of a shock but relief to get to the bottom of my pain . I use naproxen and rest to get me by (i still work anything up to 40 plus hours 12 hr shifts in my familys very busy restaurant at this point ) years down the road i suffer from terrible stomache problems tests etc done,nothing shown up . Menopause is now kicking in , started in peri menopause at 47,im now 52 . In jan i collapsed in the lakes while at a spa. The pain in my shoulders neck hips was the worst ive had , worse than my fm looking back my dr sent me for xray the previous may but they list the xray so this was probs the start my dr is brilliant though but brutally honest ! Long story short, i refused steroids my son was getting married and i didnt want the side effects . I went all plant based food almond milk no alcohol my bloods dropped to a ok level . Now im back to square one. My fault but ive dropped off on my diet a bit bloods shot up dr now demanding i go on the steroids and hes sending mebto rheumatologist. Ive not picked my prescription up my stomache is playing up ive been holding my left arm because it wont work the pain is just there constantly sorry to go on but please can you all honestly tell me how bad/good steroids are ? And do any of you suffer with gastric problems? Or ladies, the menopause and pmr/fm xx
Kick up the arse or not: Hi a question ..... am... - PMRGCAuk
Kick up the arse or not
Hello there, to be blunt, your doctor is absolutely right to demand you start steroids. You are not the first here to have been clinging on to their normal life that is fast becoming impossible due to an untreated autoimmune condition. You sound like many of us, an expert in keeping going and ignoring the warning signs of the body because it isn’t convenient right now.
To carry on your GP’s blunt approach if I may, if diet changes and non-steroidal anti-inflammatories did the trick we would all be joining the doctors in a celebratory bonfire of steroids. But we aren’t and steroids are the only way to protect you from damaging runaway inflammation. You might have a lull in inflammation but it usually comes back fighting which you are finding.
If you have PMR that isn’t treated you run the risk of getting GCA which can cause irreversible blindness, stroke and aneurysms. This inflammation can also have no symptoms for a while too but still be there. Some on here came close or actually lost sight because our bodies went straight to GCA without the PMR first. There is also large vessel vasculitis. The steroid doses for these make the PMR doses look like a walk in the park. I would say a trial of steroids would be extremely advisable if you want to avoid worse. If it is less than about 3 weeks, you can just stop. However, it means taking them and not going back to normal just because they have stopped the inflammation for now. You need to take sick leave.
For most of us who were working and generally wearing a superman/woman cape before, have had to face the fact that it isn’t sustainable. You have to make a choice. You can keep getting through your days, pleased to have kept the flag flying for now towards some sort of future where you are either dead or incapacitated. Or, you have to step away and give your body what it needs, steroids and loads of rest for a long time in order to have a better future. That’s the kick up the backside. Even if it isn’t PMR, your body has had enough of being made to keep going and is taking control for your sake. We always worry when these stories come in because we know where it’s going as we’ve been there. I was 54 and enjoying my career when GCA hit, so I know that feeling of, “no, not now!!!”.
Your stomach. It is quite possible that Naproxen has hurt it as it is one of the risks. What tests did you have that told them that it was all ok? This is important, especially if you are going to take more Naproxen or even steroids. Normally with steroids people are offered stomach protecting meds.
You’ll get more replies so sit tight 🙂
Oh Snazzy how you sum it up so well, especially the GCA experience. Your body does indeed rebel after a fast paced lifestyle with an AI condition and as much as I dislike steroids (and had all the horrid side effects) I’m grateful my sight was saved. We are all different though and not everyone suffers the same side effects. Research this site for ways of mitigation and see your GP for help if required.
My understanding is there is a risk of GCA whether or not you are taking pred for PMR and that the level of pred taken for PMR is too low for GCA, or have I got this wrong?
Right -and see this post -
If you are over worrying about the side effects of steroids then don’t. You can do things to help a lot.
I changed to a low carb diet and didn’t put weight on but lost 3 stones.
I get a few breakages in my hair but have it trimmed regularly. I get a bit of facial hair but that can be removed. It affects my blood sugars but I am a type 2 diabetic in remission for last 6 years. It makes my eyes gritty but dry eye drops work.
The steroids gave me my life back. I can do all the things I want to do with a very slight adjustment (sitting down between jobs and walking).
Please ask for a trial run and help yourself
I don’t get gastric problems from steroids. I make sure I take them with my breakfast and in nearly 7 years have had no problems.
Thanks for the antidote for my negativity!
You’re right…. and I agree with what you’ve said.
Agree with SnazzyD -and know the pitfall of not taking Pred -not through choice, but misdiagnosis of my GCA by my GP.
Side effects of Pred are minor compared with potential or actual sight loss…
❤️
I am in my eighth year of prednisolone for PMR & GCA and it has given me a quality of life that I wouldn't otherwise have had. I haven't gained weight or developed high blood sugar levels etc. I take gastro-resistant pred tablets which you could discuss with your GP because of your stomach problems. I always take them with food, too. I eat healthily, but don't avoid any food groups exclusively.
I was found (by DEXA scan) to have osteoporosis 8 months after starting pred, but I'll never know if I had it before. It might be an idea to ask your GP for a DEXA scan asap so you know the condition of your bones from the outset.
I agree with all the comments that you should give pred a try to see what effect it has on your pain and quality of life.
Best wishes.
My gosh, if I had not started steroids, I would not be able to get out of bed let alone do anything else. They were a life changer for me.
Absolutely!
For loukh as well who should see this in her notifications.
Me too, piglette. Before pred the side effects of undiagnosed PMR worsened until I found myself in a situation where I could not get out of bed, sit or stand unaided. My husband had to lower me into the car seat and lift my legs into the footwell. I couldn’t shower or wash, dry or brush my hair. I could barely lift a fork to my mouth and lost a stone and a half in weight. I needed help with literally everything apart from breathing. Every movement was accompanied by dreadful pain. I was scared for what was happening to my body from head to toe. For me, too, prednisolone was a life-saver. The day after my first dose I was able to get off the bed on my own. The gratitude I felt for Prednisolone was overwhelming.
In believe the delay in my diagnosis led to my large vessel vasculitis-aortic inflammation and aneurysm and the necessity to add a more potent medication along the line.
I hope loukh reads these responses and has a change of attitude towards Prednisolone.
If you have PMR, and it sounds like it, steroids are the only drug that works to reduce the inflammation and hence the pain and stiffness for us. Prednisalone given at 15-20 mgs will give almost immediate relief and help for the duration of the disease by stopping the harmful inflammation that can cause other problems. There are side effects that not everyone experiences but most can be mitigated and on going advice is available on here. Ensure you protect your digestive system by always taking it with something like thick Greek yoghurt and get a stomach protector like Lansoprazole on prescription. Reduce carbs from day one.
All I can add is that you have come to the right place, for goodness sake listen to the advice given here by these amazing people who know more about this disease than most professionals, you are fortunate to be able to seek advice from such dedicated and honest folk, who only have your best intrest at heart. I have been on the receiving end of their knowledge over the past four years of my PMR journey and they have always responded with good advice, do it, take the Steriods, do you think any of us wanted to take them?.
Yes the side effects of steroids can be troublesome, some get more than others. But the pain of PMR and the effects of the actual immune illness are worse. In my opinion. After my diagnosis,I could not get to the pharmacy fast enough.
This forum has been a constant support.
Please please take the steroids and reduce your work load. You do not want GCA/LVV. I had to take 60mg steroids to start with and almost immediately felt better. Yes I have had a lot of side effects but its been worth it . I also have stomach issues and take esomeprazole which is 40 mg.
But at least taking steroids meant you didn't lose your sight. I'd rather take them than risk that, despite the many side effects.
They are a life line and give QOL. What so bad in that. I have been 6 years and not had any other problems because of steroids. I need them to keep me going normally. In 2mg now and tapering slowly. 😊
And to add …. A few of us on here would love to have your GP. He knows his stuff obviously 😊
There is no one more anti steroid or in fact anti any kind of drug than me so I know where you’re coming from. I fought against them for a few weeks thinking I could reverse my symptoms with diet - it doesn’t work. When I reached the point of taking 10 minutes to just get out of bed I gave in. Within 4 days of taking Pred I could stand, sit, walk, in fact be ‘normal’ again. But, be warned, you feel so good that you can exercise like an athlete - don’t! I put myself back to square 1 by just doing a 10 minute Joe Wicks for seniors routine. You seem to trust your GP, follow their advice. Take the pred, take it steady and taper slowly.
Every drug we take has side effects but how we experience them varies. Steroids give you your life back. I ate normally and didn’t put on weight, I protect my stomach with lanzoprazole, I use drops for dry eye, keep my haircut short. I try to pace because PMR combined with steroids can make you tired. But all this is irrelevant to you because you will react in your own way and you will handle it. Your body has given you warning signs and your Doctor good advice. Take it. And do you know what? This pain is so grim, so incapacitating, that my heart goes out to all those people in the past who just had to suffer. Good luck! ❤️
Hi looks, I am so sorry about your troubles. Whether or not you decide to take the steroids, it seems you should go back to your diet since it helped you to stay well. Given your gastric issues, it may be worth asking for an injection, steroids can be problematic for your stomach. I was given Depomedrol injection diagnostically (but afterwards I took the steroids orally). PMR can be hard to diagnose and sometimes your response to steroids is what doctors want to see, so by agreeing to try them, you are not committing yourself to taking them long term. I also had a PET CT to confirm my diagnosis which was helpful in persuading me to start the treatment, so we all understand the dilema you are facing. No one can tell whether you will suffer some of the many possible side effects, but you are dealing with a balance of risks rather than a perfect solution.
Thank you so much for your advice xxx
I’d guess that of all the users on this forum, none ‘want’ to take steroids. Many have tried alternatives but I’m not aware of any resounding success stories. I don’t believe that most of us are wimps who can’t manage some pain. I get the impression that a majority have lead very active and energetic lives until poleaxed by this awful condition. Steroids are the treatment to give back a reasonable quality of life where pain is better managed.
I’ve taken steroids for over 7 years. I don’t have any stomach issues ( I declined a PPI). I take mine with a dessert spoon of yoghourt. I’ve had cataract surgery in recent months, and despite my fears, it was absolutely fine. It’s a bumpy journey, but after managing a recent flare, I was reminded just how bad the pain etc was before I took steroids. I don’t think you’re being fair to yourself or those around you by ignoring your doctor. The world won’t collapse around you if you take steroids…but the likelihood is your pains will ease significantly and you’ll remember life as it was. You won’t get a medal for continuing with inflammation within your blood vessels doing, potentially, untold damage if not better managed. Good luck whatever route you chose.
Thanks for your responce ive had years coping with pain due to fm i really dont make a fuss,just carry on living as best as i can . I try to be fair to myself ( dont expect a medal lol ) but your advice is welcomed x
I hope I didn’t sound critical; it wasn’t intended. You sound as if you’re really struggling and have endured pain for years. Living ‘as best you can’ can’t be much fun and I suspect you put others way before your own needs. The steroid journey is different for everyone but bear in mind every possible adverse effect has to be noted. There’s little likelihood of you getting most of them and a good chance the side effects would be minimal. Many of us are taking them for years and haven’t fallen apart! Hand on heart; the pay off to be relatively pain free and able to move is worth it. Pain colours your life; but not in a good way. There’s little likelihood of it all self resolving quickly and inflammation inside your blood vessels isn’t ideal. Only you can weigh up your pros and cons and I truly hope you find a solution that both helps and that you’re happy with. Best wishes.
I’m 71 and been on steroids since April this year. I’m down to 6.5 mg prednisolone and take Omeprazole to protect my stomach. I can honestly say the only side effect has been an increase in my blood sugar levels so I’ve had to cut carbs. Don’t be frightened of steroids they work miracles and I wouldn’t want to be without them. Wishing you well whatever you decide to do.
I can’t take the steroids, couldn’t cope with the side effects. Took years to get diagnosed during which time I needed carers to come and help me shower etc every day. I have other things going on as well but I simply couldn’t add Pred to the mix. I also don’t want to get into the situation where I can taper off them. Steroids are complex. If I were you I’d definitely do a two week trial but you need to speak to the Doctor about tapering and adrenal issues. All the best to you.
All the best with this and fantastic advice from all above .I find such re assurance on here .
I am a longtimer, diagnosed in 2015, by my GP, who thankfully researched and found out about PMR. I won’t go into the many struggles I’ve went through on this journey none of us wanted, as the other commenters have covered it all. As mentioned, each of us are different, I lost a lot of my active life, a lot of side effects, but my motto is ‘I’m the best I can be!’ Please protect yourself, listen to your Doctor, do the best you can. Best wishes from MI, USA.
I have had zero side -effects except or the moonface..and I have ibs and diverticulitis and a 4 cm gastric (very rare and huge) divertculum. I make sure I eat something every time I take them - and I am on a high dose, to boot. You may be like me and be just fine (and of course hopefully experience pain relief, like a miracle)
Also, the naproxen might be the cause of your stomach problems..I got the diverticulitis from 30+ years of taking ibuprofen..no more can I take them- other than under extreme circumstances one in a while.
I’ve been o steroids for 10 years and I haven’t had any side effects.,also I’ve always suffered with stomach problems and steroids helped that too. Although it will depend what problems you’ve got with your stomach. Steroids work brilliantly forPMR. Hope this helps .
Trust me - nothing will cut it like steroids. I wrongly assumed it was 'just' the perimenopause and reluctantly tried HRT after loads of other things but continued to decline to to point where I was on the verge of needing help with basic self care despite painkillers. Most of the pain and stiffness went within hours on steroids and I've since learnt about the risk of GCA. It's a tapering dose so you just have to grin and bear it for a while but PMR will tell you when that is and not the doctor. I'm actually working less now than before steroids due to side effects but been advised most of the health risks are significantly reduced once you pass 5mg. Afraid they are a necessary evil but a lot of us have carried on in denial so you're not alone. Perhaps see the rheumatologist before starting but believe you can take steroids up to 3 weeks before needing to taper and so should know how effective they are in that timescale.
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