To worried to take steroids

Hello there

Do you worry just about steroids or all medication ?? I can only speak for myself to say that the only real side effect I have had from steroids is weight gain

I have had PMR twice and so have taken steroids for probably 4 years in the last 8 With my first bout of PMR I couldnt have steroids until a Rheumatologist agreed it as my bloods werent right for PMR and so I took Ibrofen and i felt terrible constantly sick and as though my head was in a bucket and I wouldnt ever take them again I did see a Rheumatologist privately as i was in such pain I could barely get out of bed but once I was on the steroids I felt great

Hope you dont have to wait to long for your appointment and do ask whatever you wish as there is normally someone on here who can help or just lend an ear and dont forget the PMR/GCA fighters website for lots more information as well

Best wishes Mrs G

venetion - welcome to our club that none of us wants to belong to! Of course we don't mind you joining - that's why we are all here, we have PMR. We have been where you are and know what you are going through - including the \"I'm not taking steroids\" bit.

If your only reason for not wanting to take steroids is that you are scared of them - let me assure you that their reputation is far worse than reality! The other drug options - which should really be kept for when steroids have not been successful or when problems with taking steroids arise - are equally as bad if you look at their side-effect profiles.

If you look back over past posts here you will find a lot of posts similar to your and desiring either to not take steroids at all or to get off them as quickly as possible. There is no way past the fact that, at present, the only answer to the pain and stiffness and associated disability of PMR is taking steroids but the doses required in PMR are relatively low and so are not associated with severe side-effects in general. MrsK will repeat her mantra: there are at least 82 recorded side-effects - no-one gets them all. Some of us have almost none. I have put on a very small amount of weight since steroids, I put on far more before between the PMR starting and being diagnosed and treated because I was almost unable to move and exercise was out of the question.

Osteoporosis: not everyone develops it and you are as much at risk being immobile because of the pain. The most common is weight gain - Pauline and someone else has LOST weight (ony wish I knew how!). I have said before - if taking painkillers doesn't do the trick (and they rarely do) you have a choice: be an invalid or take steroids. Even the painkillers have side-effects, some severe. Paracetamol is not good for your liver and it is very easy to take an overdose which can cause irreparable damage to your liver. Aspirin and ibuprofen both irritate the stomach and can lead to bleeding in the gut - longterm leading to serious damage.

A group in the USA is in the process of a proper trial using methotrexate in PMR (I don't know if that is instead of steroids or to replace steroids in the event of problems) but either way, its not sweeties either.

Bob the builder posts here and has got through PMR without steroids - but men present and react differently to steroids in PMR. Some other people have used \"anti-inflammatory diets\" - they seem complicated and some of the recommendations are not without risks. Try them if you like - maybe they will work for you. Most of the things you will find on the internet are looking to make a profit for their authors, buy my book, come to me for this or that treatment. None are proven.

I spent 5 years \"getting by\" without steroids because I wasn't diagnosed becaue my blood values were (and remain) obstinately normal and I was \"too young\" despite being a textbook presentation in clinical terms (my symptoms etc). The relief when I was given 15mg/day of prednisolone was amazing - I could walk downstairs, sleep with no pain, not drop eveything. Its not 100% - it's not a cure. It reduces the pain and stiffness to manageable levels and gives you some quality of life. The idea is to get the dose down to a level which does that without too many side-effects. If you stop the steroids too soon, the PMR resurfaces.

On the other hand - your body being in this permanent state of inflammation puts you at an increased risk of developing various cancers in the long term. You are restricted in what you can do and become an invalid. Some are of the opinion that untreated PMR just gets worse and worse. Anyone with PMR is at an increased risk of developing giant cell arteritis (GCA) in the form of temporal arteritis (TA) but if you are not treated you are at a higher risk. TA can cause blindness, the blood supply to the optic nerve is reduced and if it affects your sight it is irreversible

Hi venetion,

Welcome to this 'exclusive club' :roll: . Sorry you had to join, but a lot of folks here can offer good suggestions and share their experiences with PMR.

Firstly, the 'steroids' used to tread PMR should [b:bfc07cef9c][i:bfc07cef9c]not[/i:bfc07cef9c][/b:bfc07cef9c] be confused with 'Anabolic steroids'. The steroids used in the treatment of PMR are 'Corticosteroids', which is closely related to cortisol – a hormone which is naturally produced in the adrenal gland. Corticosteroids act on the immune system by blocking the production of substances that trigger allergic and inflammatory actions. They can quickly reduce inflammation and pain. As others have said, Prednisone (or Prednisolone) doesn't cure PMR but allows us to live a normal life and deal with the pain of PMR... until such a time the PMR finally leaves us.

Hello Venetion,

You have all my sympathy - I never used to like taking any medication at all, nor the idea of my body not working well and having to rely on putting stuff into it to make it work! I don't know whether you identify with that or whether it is more that steroids sound scary! :shock:

But I have got used to them, and my GP is very good at letting me monitor how I feel and adjusting the dosage. Yes, there are some side effects but they tend to go as the dosage diminishes. Mostly weight gain as Eileen says. And few of us get much more.

This site is so helpful and supportive, but I suppose because of its nature one tends to get the problems reported rather than the successes! And we tend to let off steam here rather than to family and friends, who find it difficult to understand so it's not all doom and gloom.

I do so hope you get the help and advice you want - think up your questions in advance, even write them down. I'm very bad at remembering them as I go out the door so to speak :cry:

Green Granny

Hello Venetion, I was diagnosed with PMR last July. Was put on 20 mg Preds. I am now decreasing slowly ( as advice from the dear ladies on this site...) I have put on a little weight, and may be some time I have a woolly head...but rather this than the unbearable pain ! I hope you keep reading the post on this site, as the learning from it is incredibly useful. Also, I do not suffer as much as I did from depression, which is great !.

Hope you will feel much better soon. Granny Moss.

Hi Venetion. I have had (diagnosed) PMR since November, and discovered this great forum only just a few weeks ago.

I love this site and the ladies who write on it.

As others have said, we can learn, rant and complain about our symptoms here in a way that our (non PMR suffering) friends and family would never understand.

Keep watching and reading the posts, you will learn so much from fellow sufferers, as I am doing right now.

gilly.

Thank you all so much for the replies to my query.No it is not all medication I fear only steroids although after reading all the replies I am slowly comming round.Anyway dont think I can stand this level of pain much longer I am not much fun to be around at the moment.I also have thyroid problem and take 125mg thoroxine also high blood pressure.Havnt really had any side effects with any of these tablets.Thanks again for listening and I will let you know how I get on. VENETION

Thank you all so much for the replies to my query.No it is not all medication I fear only steroids although after reading all the replies I am slowly comming round.Anyway dont think I can stand this level of pain much longer I am not much fun to be around at the moment.I also have thyroid problem and take 125mg thoroxine also high blood pressure.Havnt really had any side effects with any of these tablets.Thanks again for listening and I will let you know how I get on. VENETION

hello Venetton

I can see why you would be more concerned about steroids as you already have other health prooblems There are other people on her with Thyroid problems so I am sure they can help

I did find that the first time I had PMR and i had to wait ( even with a private appointment with a Rheumatologist ) to get my steroids was the most painful and draining period of my life so once I started taking them I never really thought about them

Hope you dont have to wait to long for some relief

Best wishes Mrs G

Hello Venetion and welcome...... I have only just 'joined' this fabulous club of wonderful people....... I too was very 'anti' steroids but after months and months of pain and decreasing mobility ( to the point I though I would be wheelchair bound in the new year ) once PMR had been mentioned and steroids prescribed, I took them and WOW!!!!!

The immediate response was fantastic and although not really happy about the next few years on them, will take them and thank my rheumatologist for prescribing them...... yes I am up and down at the mo whilst they are trying to get my initial dose reduced and it is a pain to be back in pain and discomfort..... BUT they are my lifeline to getting my life back at some point in the not too distant future.

So try not to worry and remain open minded...... as the wonderful people here have said, not everyone has side effects etc and as far as I am concerned, those that I am experiencing I hope are transitory and a small price to pay for being able to look forward to being PMR free at some point down the line.

Stay strong.... Take care......fiftiesgirl :D

Hello Venetion,

I was diagnosed in mid July too and share your worry about going on steroids. I’ve done without them, or painkillers until just before Christmas, when I read some messages on a US forum for PMR which decided me to take 5mg tabs of prednisone for 5 days. I discussed this plan of action with the pharmacist who suggested that amount and my doctor who suggested taking 5 on the first day, then 10, then 15. The effect was remarkable – about a 60% reduction in pain and stiffness within a few hours.

I don’t feel tempted to take the prednisone on a long term basis but will use it when I have flare ups or when I have something important to do.

After Christmas I began taking 2 x 2 panadol osteo tablets 12 hours apart on a daily basis. This reduces the pain and stiffness to a manageable level though nowhere near as much as the prednisone did, and I am able to walk freely. There don’t seem to be any immediate side effects though with long term use there is a slight risk of liver damage. I had headaches and immediate reflux with the prednisone. I am able to do 1.5 kms beach walks (about a UK mile), get up from sitting, touch the floor once again and walk downstairs normally. The main relief is to the muscles of the pelvis, legs, clavicles, upper back and right shoulder. My wrists, hands are still painful (this is new) as is the left shoulder (capsule injury) and the pain in the neck fluctuates! Is there a metaphysical message there? javascript:emoticon(':roll:')

If more pain relief is needed, the pharmacist suggested I try Ibrofen though that is likely to reactivate the reflux and has more side effects than the panadol osteo. The next step after that would be the steroids but again I think I would prefer to take them only to relieve flare ups on a short term basis.

Hopefully this plan, combined with a diet high in anti inflammatory foods will keep me going until the PMR decides it’s had enough of me. I googled nutrition data and the first site up, lead me to info about anti inflammatory foods.

What I’m doing would probably not appeal to many people so it’s not advice; just sharing my experience of an alternative experimental approach to PMR and working it out as I go along.

Good luck with whatever you decide. Jill 48

My user name is jill48 but that is not being accepted probably because I've not posted for so long

Hello Venetion, Whilst I was composing the message to you, yours about taking thyroxine appeared on the board, which makes things a whole lot complicated. I do hope your doctor comes up with something that will help you. Jill

Jill - had I had that sort of relief from any form of painkiller I would have accepted it! The first 5 years were bad but not awful and I dealt with it. Then the full-Monty version appeared. After 6 months of sitting in the house in tears after getting out of bed and having a shower, needing an hour to recover enough to even think about getting the ironing board out and taking 3 days to iron the week's washing, steroids were a miracle! I wasn't delighted at the concept of steroids - but everything has a downside, there is no drug with no side-effects. I decided I'd take life now and worry about the rest in 10 years time. The alternative appears to be start being an invalid now - remember I've had it at least 6 years now with no remission so I'm rather sceptical about the \"burns out in 2 years\" story. I hate being fat, I'm still unreliable - but being less fat and even less reliable and in constant pain would be far worse. :lol: :roll: The hand pain was the worst - like knives in the finger joints. Could barely hold a wine glass and that was not on!

cheers all

EileenH

I am with you Eileen I was in far too much pain to worry about steroids !! I was only 54 and it had crept up over about 4-5months but suddenly escalated and I could do nothing my legs didnt want to bend at all

One day I had a Drs appointment and dropped my car keys !! I couldnt bend my knees to get them as the pain was so bad so decided to throw myself on the carpet and struggle up afterwards I would take ages to even get off the seat at the Drs !! When i was in a restaurant one evening and needed the ladies I couldnt straighten up and walked like Dick Emery across the room !!

Steroids gave me virtually instant relief and every morning I was nervous of waking up and finding the pain had come back I just think every drug has a side effect and I do know more people who have had problems with Methatrixate than steroids so they are my friend not my enemy

best wishes Mrs G

Jill48

You wrote [i:bf9e8c929b]\"and the pain in the neck fluctuates!\"[/i:bf9e8c929b]

Keep an healthy watch in this pain and if it moves upwards towards the temple, please go visit your GP.

This was an early warning sign that I missed completely.

Take a look at www.pmr-gca-northeast.org.uk when you have the time and read up on diagnostics for both PMR and GCA.

On acid reflux, Mrs O (I think) advised me to try Juice of one unwaxed lemon, divided into three, add to glass of water three times a day - acid reflux gone. The acid in the lemon turns to alkali and if you put the lemon in a microwave for one minute the amount of juice is doubled. trebled.

We passed this tip on to so many people and it has worked for everybody who has tried it - unless those who it did not work for did not bother to tell us.