Hi I'm on 40mg of pendisalone for last 3 weeks and feeling awful . I see Rheumatologist in 2 weeks and am terrified of what steroids will do long term. My weight has tee bled in such a short time . Any advice would be grateful thank you
New to steroids and fearful: Hi I'm on 40mg of... - PMRGCAuk
New to steroids and fearful
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WEIGHT TREBBLED ( spell check )
Hi Determinedebbie, I think all of us have felt the same as you, worried about taking steroids, for myself, if I hadn't been prescribed this drug I would have been in a worse situation than I am now.
I felt really unwell, fatigued and loneliness the first couple of months on steroids. (Loneliness because I had never heard of PMR and GCA, neither had any of my family or friends, so I had no-one to discuss this with until I found this site)
There are many members who know far more than I do and will be best able to support you through this difficult time I'm sure.
(You didn't say what your health problem was.)
I hope you feel better soon.
Hi I'm just another on steroids myself and so am not a medical person but from what I know and if you have PMR then you should be reducing your steroids pretty soon which also should make you feel a little better. However, if you have GCA then I'm not sure what happens. Can you say what it is you have got?
Don't be fearful, I've been on them now in varying doses for 15 years and I am still up and doing! Did you doctor say why he had started you on 40mg? It's a high dose for PMR alone.
You have some control over the weight gain if you go low-carb, it does seem to help those of us with PMR/steroids.
My best suggestion is that you write it all down before you see the Rheumy. What pain you have, when you have it, what might trigger it off, how you feel in the morning, how you feel at night, in short everything - a pain and symptom diary. You'd be surprised at the difference it makes (especially if you are like me - the moment I sit in the surgery chair I completely forget everything).
Hi polkadotcom, doctor has also given me some pill that I have to stand up for 30 minutes after I take it and no food or pills with it. I'm a bit concerned re the side effects, do you take these and do you have any advice please
That's probably Alendronic Acid given to treat osteoporosis. Have you had osteoporosis confirmed? Have you had a bone density (DEXA) scan?
If you haven't had either of those, then ask for a DEXA scan. I would only take them if osteoporosis has been confirmed and the side effects liveable with. There are other options.
You can only take them for 5 years, so if you are taking them but don't really need them, it leaves you with problems later on if you find you have osteoporosis in the future - you have nowhere to go.
Thanks polka dot, they said I have pmr and fibromyalgia. I haven't taken the steroids for a week now, I was only on 2 a day but it seemed the side effects were worse than suffering the pain , and my blood sugar went up to 29 I'm due to see doc next week am dreading the explanation that I've stopped the pills.😉
Just once a week? As polkadotcom says, probably a bisphosphonate of some sort for bone density. I never took them - my dexascan was fine at the start and didn't change in 4 years on pred so I'm glad I refused them.
You don't have to stand up by the way - sitting upright is enough. But if you take it immediately you get out of bed and then go and get your breakfast ready/have a shower or wash without bending over and so on the half hour soon goes.
Hi Debbie , I have been on Pred for a year now and had similar feelings when I first went on it , but there is a lot of advice and encouragement on here so don't feel alone keep asking away and you will see a great response from some very knowledgeable people. With regards to weight Pred it doesn't put on weight it may distribute your body fat percentages a little unfairly , what puts on weight is the increased appetite , I have taken control of my diet ( and it was hard) I am now 2kg lighter than when I went on Pred , that wasn't the case 6 months ago I had increased by 8kg in a matter of months . It's hard but possible , it's just a matter of input over output, the problem is with conditions such as PMR (fatigue) can be soul distroying but stay strong there is a light at the end of the tunnel. ( is it PMR you have ?)
Thank you so much for reassurance . I have pmr and gca just waiting for 1st rheumatology appt in 2 weeks time . Just terrified of tablets ... What a whimp :(. I'm so glad I put up post . I don't feel so alone xx
Unfortunately pred itself CAN cause weight gain without eating more - I know several people who put on weight without eating more than usual. I can only lose weight by taking carbs out of my diet, even with a calorie controlled diet I stick at the same weight until I take out the carbs. Because of its effect on carb metabolism it leads to deposition of fat in the typical places although you are quite right - the fat will redistribute to those places even if you don't put on much extra weight! Pred can also led to fluid retention - and water weighs too.
Thanks PMRpro for sorting that one out , I must just be one of the lucky ones upto now , my weight control at the moment is in check but it is a constant battle .
Agree - spent two yes loosing 2 stone in weight, kept it off first 6 months on Pred but last 6 months finding a stone back on. Doesn't help when too tired to exercise. Craving worse since on a lower dose - now only 10mgs of Pred down from 60mgs.
Hi Maxine59 - I did the same I had dieted before being put on steroids and lost a stone, i held that without any further loss once on steroids then slowly it crept back on and over the last 15 months I am now at my heaviest having put on almost another stone. I eat no white bread, pasta, limited potatoes and only the occassional treat (if I go to a coffee shop) very frustrating!! Down to 11mf from 40 but no change as yet .....
So frustrating isn't it. I just think it could be worse if I didn't continue to make an effort. The Rheumatologistjust says it will come off when I stop the steroids - true but when you are feeling unwell it doesn't help. At least the warm weather encourages the salad eating. I don't mind walking , swimming and recently bought a bike but I am so tired after working I don't always have the energy. I am so much better now than a year ago so remain very positive 😄
Hi Maxine-59
Yes really frustrating, i know I was eating more, comfort eating and with increased appetite at about the 6 month point of preds. But I am not now, so I have stopped gaining but still not losing. I suffer terrible from fatigue and have other aches and pains that I have just be prescribed further meds for (?RA), so exercise is limited, whereas before I was extremely active, this doesn't help. Just really hope that the weight does come off when the steroids are gone. I am two months into a 3 month sicness break, due to go back begining of September so a little anxious about that but feeling more optimistic than I was two months ago, when I had a flare and went back up to 30 mgs. On 11 now so really pleased.
Best wishes to you and I guess if we are feeling better the weight gain is a small price to pay
Unfortunately I find that unless I eat more carbs I don't benefit from the edgy boost from the steroids. I think we just have to do & eat what seems right yo us, but I find cutting out wheat ie cakes biscuits cornflakes etc and using oat based foods helps the weight problem a bit. You are definitely not a wimp! We have all gone through that fear & worry butxI have been in steroids got 20 years & had a friend who was in them from age 80 and eventually died of Old age at 103 so don't be too worried!
I have a variety of clothes sizes in my wardrobe though cos I go up & down in weight according to the variation of my prednisolone! Good luck!
I'm with polkadotcom on this one. When I was first put on prefer I put 3stone on in 3 months! In the end I came off them to halt the increase. I went away and thoroughly researched a low carb/high fat (LCHF) way of eating and since going back on prefer 3 weeks ago I haven't got the "moon face" and have lost 7lb. Don't let the high fat part deter you. It's the good fats that make you feel full and stop you constantly being hungry. Good luck Determined Debbie, you are amongst friends here. X
High fat Atkins type diets are not recommended by most qualified nutritionists.
Will look to cutting carbs for now thank you for taking time to reply .. Very grateful x
It is less high fat than low carb that is the trick and such diets are recommended by the American Diabetic Association for management of diabetes. Pred changes the way the body processes carbs and that is also the reason they can lead to steroid-induced diabetes. Cutting carbs drastically helps a lot for both problems as others have said. You can still eat some carbs in the form of non-root vegetables (preferable to fruit in this case as some fruit has a lot of sugar).
Totally bamboozled by diet choices , I've been snacking in fruit ??
Apart from berries (blueberries, raspberries, strawberries for example) fruit is very high in fructose, a sugar - not bad in itself, added sugar is the real no-no, but carbs all add up. There is more carb in some vegetables too, especially root ones, so while the odd carrot or serving of peas will not matter, eating potatoes and other roots such as beets or parsnips will soon add up. Leafy vegetables and salad stuff is better. One lady swears by a cucumber kept in the fridge - when she feels hungry she cuts a chunk and eats it. It is mainly water but has a nice satisfying crunch so your mouth thinks it has been fed!
And very often you get a snack because really you aren't hungry but thirsty - get a large glass of water instead and go away and do something else for 1/4 of an hour. You'll probably forget about being hungry and save all those calories! A recent study has shown that drinking water half an hour before a meal helps you lose weight
Thank you , I'm drinking gallons of water and weeing for England !! But worried about electrolytes particularly loss of potassium , magnesium .
Funny about cucumbers ... Found some mini ones in liddle so cute . I must admit I've been comfort eating whole tubs of ice cream .. No wonder I have problems !! Thanks for great advice
You are not going to put on weight if you restrict the amount of energy you consume to what you expend. Nutritionists recommend a balanced and varied diet to maintain health. This would include healthy fats, albeit weight for weight they have twice as many calories as protein or starch. A diet that excluded fruit, root vegetables , wholegrains or dairy products for that matter I would have thought could be considered unbalanced.
Did Determineddebbie say she was diabetic? In which case I guess she would seek professional dietary advice
As she says - not yet. But it is a very real risk when we are taking corticosteroids and prevention is better than cure.
However, the biggest problem is that when you have PMR exercise to use up those excess calories is very difficult. I put on weight with PMR - simply because I couldn't exercise as normal, it wasn't pred, I wasn't on it then. Even when I started on pred I still had difficulty doing enough exercise to lose weight, as much because of the fatigue as the PMR. I cut intake a lot but even at 1200 calories under the supervision of a dietician at the hospital I didn't lose weight until I cut carbs.
It is beginning to be realised that carbs DO play a large role in weight gain - and that fat is NOT the devil that it has been made out to be. Ancel Keys' work was flawed - his views on the role of fat was based on a study done in several countries but omitting France and Germany who both had high fat levels in their diet but low cardiac disease rates. And his work in Crete was done during Lent - no self-respecting Roman Catholic includes fat in their diet then so the results were seriously skewed!
Is this the same association? In which case, they recommend a balanced diet and some tasty recipes! Wholegrain noodles and brown rice encouraged.
diabetes.org/mfa-recipes/ti...
The truth of course is that there is much contradictory opinion on the Internet. Take your pick. Surely the best thing is to take well established advice from organisations such as the NHS or BDA?
The following link gives comprehensive and authoritative dietary advice from diabetes through to fad diets
bda.uk.com/foodfacts/home#w...
I tend to read medical papers in reliable journals - not Gwyneth Paltrow's latest fad! I'm well aware of the junk you find online.
No, I don't agree that the "well established advice" is necessarily correct - that's why I mentioned Ancel Keys. It is his work that has informed the advice given over the last 40-odd years about low fat diets which has been tracked by the increases in obesity and Type 2 diabetes - and it is not just coincidence. There is sound scientific basis for the changes in advice regarding cholesterol and fats in general over the last few years and much of the low fat lobby comprises food manufacturers who have a great deal to lose if the public change from the low fat products they produce - and which are packed with sugar and chemical to make them taste more palatable.
There is, however, no logic at all in telling diabetics to eat quantities of carbs which then require medication to deal with the raised blood sugar levels they lead to. The human body doesn't require glucose to function - it is designed to make it if it isn't available - but just small amounts of carbs are enough anyway. Yes, it is the same association - but your Asian diet page is just one option.
Do you mean like paleo diet ?. I will defiantly look at cutting carbs though . I penny wish I could exercise , my muscles in my buttocks keep spasming when I walk ... Was wondering if I could be low on magnesium ? My it's a journey of discovery , thank you for good advice xx
You may also have piriformis syndrome - it affects the muscles in your buttocks and that can pinch and irritate the sciatic nerve as well leading to pain along the course of that nerve down into your legs. Perhaps your doctor would refer you to a physiotherapist to investigate that possibility.
Yes paleo/keto/low carb. It has certainly curbed my appetite as I always said that I didn't have a "full switch" so I could eat for the fun of it. Ditch the carbs has some wonderful recipes and information. Take control of your body any way you can, it'll give you a mental boost. As for exercise, I gave that the heave ho and just do what I can, when I can. Xx
PRED NOT PREFER, BLOOMING PREDICTIVE TEXT!😁
Hi Debbie. So many felt exactly the same as you. I was started on 60mg 20 months ago. I have GCA. I was confused, frightened and angry. The Pred did play havoc with my body and mind but with the help and support from groups such as this. I gained knowledge and learnt to live with my condition. You may need to make some life changes. Eat clean an healthy and also more rest time. I think all of us would agree that Pred is a nasty med with many side effects, but we literally can't live without it. Good luck X
Thank you I think I'm gonna need it .. But since reading on here today I've already shaved off the things I don't need to be doing and taking things easier , my fighting spirit wouldn't let me take life at a slower pasc
That's good. You do need to be kind to yourself. I was the same as you. I am a fighter and a "do er". Took me months to get out of denial and stop trying to fight it. I was just making myself sicker. You just have to stay strong and go with it xx
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Weight trebled????? You've gone up from perhaps 65-70kg to 200kg in 3 weeks? Are you sure?
While you are on the high doses of pred for GCA you will probably feel quite strange - but you will start to reduce the dose, probably after you see the rheumy, and then you will start to feel better.
Longterm pred can cause all sorts of things - but there are almost none of them that are as bad as the potential loss of sight that GCA without pred can mean and they are very rare.
Thank you , I would say I've put on a stone in a month easily
I put on 5 stone in three months with 30 mg , my doctor kept me on that dose for over 9 months and I ended up with a moon face called cushions, I gradually dropped down to 5mg and the moon face went. I have been on steroids for over 12 years and ended up with pancreatitis and ended up in hospital. I was told it was because I have been on steroids for so long. Thirty years ago they said I had PMR after 20 years they said no it was Rheumatoid arthritis six months ago the changed their mind again and say it is psoriatic arthritis.
40mg sounds rather a high dose to me, although I am no medical expert. I am sure the Rheumatologist will sort it out. I hope you will soon be feeling much improved.
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40 mg for gca is about right aparently . It then gets tapered off with regular blood tests to see what esr is doing and so I begin my journey . Just need to get diet in hand now !!!
Thanks for responding , I wish you well
I hate all the meds - have GCA and PMR , but know the meds keep me safe😄 from heart sttacks, strokes and potential sight loss.
I think it is all of a bit of a shock at first - but you will be amazed what you get used to in terms of living with these conditions , you will be ok.
Hi Debbie, I have the same condition as you. I too was given 40mgs. per day and felt like you feel, they changed it to 35mgs after a month and I have gone up and down since then. I started in Nov.2015, I am now on 20mgs. per day, my lowest was 15 a day but increased after a chest infection. I have been on this dose for 9 weeks and feel the best I have for ages, I still have the shakes, fatigue, etc. but exercise by walking every day if possible, I have been fortunate in that I haven't put weight on but I watch what I eat and appreciate that it could happen at any time. I have got lots of tips from experienced people on here who really know what they are talking about and are always willing to help, its like a beacon shining in the dark when you are first diagnosed and don't know the full facts, good luck.
Yes I agree with you about this forum . 12 hrs ago I felt like giving up and all these really helpful replies and not being on my own has turned me around , I've rested and researched various suggestions . Just stuck with steroid dose until I see rheumatologist in two weeks time . Thank you so much , I've requested to follow you , I hope you don't mind we sound so similar
Hi Debbie, no I don't mind at all. Iws told at first that I didn't have GCA and was taken off the steroids, but I then had problems with my eyes and I was put back on them. I was told that I had to get off the steroids as soon as poss. the inflammation proved a problem in that it went down then back up, I now wonder if it was done too fast, I changed doses as instructed on a three weeks basis, then a month etc.I realise the Drs. were doing their best but it is frightening. Now, after a biopsy, which was non-specific, a PET-CT scan which showed no additional inflammation, I just go with the flow, I have no aches and pains just fatigue which seems to be getting a little better. I have a sister who has the same condition, and a another sister with a sister-in-law who also suffers too, she had a lot of problems with mini-strokes before she had a final diagnosis, so it could be worse. I also recommend the book by Kate Gilbert which enlightened me a lot, best wishes.
Thanks Lindy , I think what I'm gleaming from various replies that it's finding a balance with steroids verses esr crp levels and not tapering off too quickly . I hate the 8 steroids a day but will need to be well informed about being tapered too quickly . I hope I have a rheumatologist who will allow me to be proactive in managing/ discussing this God awful illness. I think it's important to recovery to not be passive ? . It's good that ( not for them !) you have other family members to share tips with . Please keep me in the loop re anything you think might be useful . I will buy Kate's book thanks ... Have a lovely Monday , it's a foggy start here in the Cotswolds
Debbie, I hated taking 8 tablets, along with antacids for my stomach, alendronic acid for my bones (which was changed and is now better) I have never taken so many pills, I never question my Rheum. maybe I should, he is I consider very good, but he listens at least. He told me it was a 2yr. process which I have learned from here can be a lot longer, depending on the persons reactions to the steroid tapering. All we can do is hope for the best and keep visiting here to learn new advice, some people on here seem to know more than some Drs.
Yes I think the people on here certainly know what your talking about . Do u mind if I know how long you were on 8 please and then subsiquent tapering ? . How are you these days ?
I write everything down, I was on 8 for 6weeks, 5 for a month, 4 for 2weeks, up to 6 for 6 weeks (chest infection), 4 for 10 days, 3 for a month, and I have been on 4 for 2 months cause my bloods went up and they thought there was additional inflammation, but the PET-CT scan was negative for this so I see my Rheum. in 2 weeks. from the start in Nov.2015 to now is the time scale of the above tablets. I am less tired and seem to have been better since the tablets haven't been changed so often, I slept terrible at the beginning, and was even more tired, I manage my fatigue better than I did, the frustration of becoming moreinactive than in the whole of my life, was bad at first, then you read some things on here and it gives you hope, we are all in the same boat, thank goodness people are so unselfish and helpful!
Your doc may be using this steroid for diagnostic reason,so don't get too worried. I was given the same drug some years ago &like you I got very worried. Please don't get het up,I expect the Predisalone has made a big difference to how you feel physically. Also as you're going to see the doc in two weeks it is exactly what I went through at the beginning. IF your doc suggests you stay on the Steroids you have the right to say NO. It maybe that its use will detect that you don't have R.A.at all.
I was diagnosed through the use of this steroid to have R.A. so don't fret my friend.
I refused to take steroids & I've been diagnosed for over 5yrs. Your doc/consultant should have told you why you had take this drug
I'm guessing he/she didn't so.
Hopefully this reply helps you to relax a bit more. I hope you don't have R.A. but if you do DONT FORGET it's your life,body &there are plenty of alternatives. I know that's a fact because said NO as like you I was not going to do so until I am a lot older. At that stage it's s different ball game.
Let me know how you get on,& take a few deep breaths,the shows not over yet.bye for now and I wish you well...x
This is a polymyalgia rheumatica/giant cell arteritis forum - not RA which is a completely different thing. If you have either of these illnesses you have only one choice: take pred or don't take pred. There are no other drugs which work to control the inflammation although we are waiting for the results of a clinical study in GCA using tocilizumab. That is irrelevant for PMR however.
In the case of polymyalgia rheumatica that isn't such a big deal if you are prepared to put up with the pain and immobility which can be so bad you are confined to bed and reliant on others for everything - including toileting. Some people do choose that - others of us do it without the choice, we simply aren't diagnosed for a long time. But you remain at risk of other illnesses - the unmanaged inflammation increases the risk of vascular disease of various sorts and even some forms of cancer.
If, on the other hand, you have giant cell arteritis, it is a very different kettle of fish: you are at risk of losing your sight if you choose not to take corticosteroids, in this case prednisolone. There is no other option at present that works reliably.
Please don't tell patients who are under investigation for GCA (judging by the dose that is what is suspected) that there are plenty of alternatives. There aren't. It's as simple as that.
Awe thanks Jen , it's awful when your not one for drugs . The doc put me on high dice for gca and when I had scan .. No sign so hopefully I can taper off steroids under rheumatologist appt in two weeks . Do you go down the alternative route ? . Thank you for your time Jen it is greatly appreciated x
It would be good for you to read the book written by (someone help me out here) that is brilliant for describing this illness and ways of coping.The drugs are not great but if it is that, or have no quality of life, then they become more attractive. This site is great and we all help one another as we go up and down the PMR/GCA roller coaster.
If you think of the book please drop me a line ... Just being on here today has helped me immensely thank you
Debbie, the highly recommended book is 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', written by Dr Kate Gilbert, ex-Chair of the Charity, PMRGCAuk, and a post sufferer, now in remission. It is available on Amazon and direct from the Charity, pmrgcauk.com. All royalties from the sale are donated to the Charity.
There is also a booklet of tips and tricks for helping with this condition available on the link provided by PMRpro.
Do you mean Kate Gilbert's book about surviving PMR? Which I thought had a link on the side of the page but there isn't ...
Or the northeast of England support group book "Living with PMR and GCA" which is available from the shop on their website.
I think the book that Judi is referring to is Polymyalgia Rheumatica and Giant Cell Arteritis a survival guide written by Kate Gilbert. It is an excellent informative book.
Regarding feeling unwell on the prednisolone ...I too took them for 3 weeks last year... at first I felt so well I could run upstairs again within hours of taking them !!!! and all my energy returned, I was cleaning and doing things I hadn't done in a long time. I felt like a bird that had finally been let out of it's cage ...I was enjoying life again but .... I was getting higher and higher on them as the days went by and I was burning the candle at both ends. I was going to bed at midnight and getting up at 5.30 am.
I ended up in hospital ...I was suffering from steroid psychosis I was so unwell it was just awful. please google it as it is too painful for me to tell you about it. I have never suffered from mental illness in my life until I took the prednisolone I am not trying to scare you but just to warn you that they can be a very dangerous drug. You said you didn't feel well or right on them I would urge you to go and see your G.P and tell them this.
I can never take prednisolone again because of my reaction to it. It has taken 12 months to recover from the effects. I am back to being in pain & can hardly walk again.
Sorry to hear your plight with steroids . Were you on a high dose ?. I'm 3 weeks in on 8 a day and like you were buzzing my heart litterally felt like it was bursting out of my chest . I'm learning how to slow down ... Found a free mindfulness app called "head space "which taught me in very small sessions how to meditate . I've also made my bedroom a sanctuary at night as don't sleep and put a " do not disturb" timer on my phone . I have no choice but to be on these wretched steroids till my appt so trying to calm down and relax . I agree feeling like life is out of control is scary . I wish you well xx
I was on 20mg a day for 3 weeks ...so only half the dose that some people take. Your description of 'your heart bursting out of your chest 'is very apt of the sensations that I was experiencing. I remember thinking that I could put up with that feeling as I felt so good on them... I told everyone who would listen to me how fantastic I thought they were as all the pain in my groin, hips & legs had disappeared literally overnight. I also felt strong again my leg muscles were no longer weak, I could get up out of a chair with ease. I was doing all my housework with ease ! .
I had been diagnosed with fibromyalgia , then I had a really bad flare & my esr & crp blood results were high and I felt like I was wearing a 'pain girdle' right round my pelvis that was why I was started on the prednisolone. In the past I had received steroid injections which had always helped & I had never suffered a bad reaction to them ..I can only think that they must be a different type of steroid ?? Now because of the pred reaction they will never allow me to take steroids in any form again.
Obviously they work well but there are side affects and I was just one of the unlucky few who they made really ill. I was prepared for the weight gain, the moon face the hunger cravings as I had read up beforehand. I was not prepared for the psychosis ! I didn't think that could happen to me ! I would be interested to hear if anyone else has suffered from steroid psychosis after taking them ?
I wish you well too & hope that the prednisolone will make you better. Take Care.
So if your steroid free are you back to square 1 with pain? Don't answer if its invasion of privacy . It's just I don't like steroids
My heart is 105 now and really not feeling well
Hi no I am not back to square one now. The pain girdle feeling has gone so the pain in my hips is not as bad. The weakness has returned & pains in my legs & lower back making walking difficult. If you feel so unwell I really do suggest you go to your G.P cos if I had gone sooner maybe I wouldn't have ended up in hospital.
My gpisn't the greatest I think it's more 'mental' don't want to be around people . For instance I've just been with a group of women who don't know they're born with fantastic husbands and moaning about them . I'm a disabled single mum . Thank God I'm home and my house is cool . You people on here are keeping me sane Thankyou x
Injections are methyl prednisolone, the tablets are usually prednisolone in the UK - so yes, they are different although the methyl pred generally tends to be associated with more side effects (was for me). I do know someone else who developed the psychosis at higher doses but she isn't on this forum, she doesn't have PMR.