Have you experienced any of the following pr... - Vasculitis UK
Have you experienced any of the following problems, that you consider to be a consequence of taking steroids?(multiple choice)
It's an evil drug.
But for some of us, the only Other option to no treatment at all
It shouldn't be like that at all. You should be given a choice. Be assertive and insist when you are not happy about something. In the US, you are given IVIG or Plasmapheresis. V is a life-threatening condition. Dependency on steroid only approach must be seriously re-considered.
I reacted badly to both
Yep I did too. Did nothing for me at all, made me seem worse.
Used properly and carefully - steroids save lives and sight. They are not evil.
There is no side effect of pred that is worse than being blind or - god forbid, dead. There are some people who have no other choice.
But where would be without it.
I experienced massive weight gain with one form of corticosteroid (methyl prednisolone) - and have lost it all again on another (prednisone as Lodotra). With prednisolone I did not really gain weight - the weight I had gained due to immobility rearranged itself to the usual places, midriff and face.
The tendon problem was not only due to being on Medrol - the GP gave me a quinolone antibiotic at the same time - each can do it and both together obviously is even worse, my own fault to some extent for not checking.
I realise I have probably been very lucky but it isn't just a case of corticosteroids have side effects - different ones do different things to different people. Changing your diet can avoid some of the problems such as weight gain and diabetes - taking carbs out of the equation as far as possible makes a big difference.
Used properly and carefully - steroids save lives and sight. They are not evil.
And beard, and I'm a lady!
I ticked Cataracts and Other: I was put on 60mgs Prednisolone at the beginning and after 2 weeks they were reduced to 40mg - overnight - and thats when the ear pain started, mild at first to life changing levelnow. This was 3 years ago and since then l have had to take various levels of Pred'. as high as 1gm for a few days, down to 8mg now; under the Pain Clinic at Addenbrooke's, as well as Cl12 and Cl3 /14. Ohh, happy days. 
I had no choice and it saved me!! In the beginning I was on 60mg daily. I am now on 7mg, decreasing monthly. It affected my moods badly but I am starting to feel my old self again
Prednisolone saved my life so I accept the side effects. As welI as the effects listed in the poll I have raised cholesterol which I am told is a side effect of steroids. I control it more or less successfully by a low fat diet My medics don't want to give me statins as I already experience muscle weakness.
I also bruise like a peach, just crossing my legs or scratching my arm leaves marks. My eyes water constantly too, no drops or gel seem to help, and wiping them leaves bruises around my eyes as well - I look like I've gone 10 rounds with Mike Tyson!
My husband has the watery eyes, been investigated and he will be having an op to unblock his tear ducts but has to be 2mths after a Rituximab infusion.
Increased cholesterol as well, although I manage with Benecol drinks. As PMRPRO says some people don't have a choice. I need to take her advice and cut out carbs, but I love pasta and rice 😏
I am not always sure what is illness related and what is a side effect of the medicines. Weight gain, insomnia (much better now when I am on low dose of steroids), muscles got weak, got diagnosed with osteoporosis and my skin is dry. Yay I am alive and getting better!
Excess facial hair, bouts of acne, occasional urgency for the toilet.
It's difficult to accurately know if these effects are due to Prednisolone....I have experienced these and am aware of the side effects as described on the packets.
I can't face the thought of going back on it!!!! I am not me anymore
Just increased my dosage a couple of weeks ago. This may explain why I am ravenous.
Insomnia was really bad when I was on a high dose; now I'm on a low one so it's more that I have occasional bad nights. The weight gain hasn't been massive, a bit less than a stone - it's more the redistribution of weight that is a problem! Skinny arms and legs, too much tummy and I've still got more neck than I used to have, even though the hamster face has gone.
I've also developed cataracts, very quickly, but the first of those should go in an operation next month....
Not the best of drugs, but I do realise that I didn't have much choice when I was diagnosed 4 years ago.
I hope all those on long term steroids are taking Alendronic Acid 70mg once a week as this is used to help the problems with bones. I wasn't given this at the beginning (2004) and have had to have both hip's replaced (2013 & 2015). Also i got scleritis and had to have a cataract op.
I have been back on steroids since March 2015, was gradually been weaned off them 7.5mg when my GPA had a massive flare in November was put on 40mg for 2 months now reduced to 30mg so have the weight gain, acne, sleeplessness (but improving) and swollen ankles.
The good thing i am here and able to reply to this. now when my Consultant's get me sorted at the hospital the weight will eventually come off (i hope).
I had a Dexascan to see if my bone density was OK when starting pred, which it was, I don't think I would take Alendronic Acid unless I had a problem, as you can only take it for five years. I think I would prefer to wait until I really needed it.
Like piglette I had a dexascan a few months into pred which was fine so I stopped the AA which I was very unhappy about after 4 weeks. Nearly 4 years later I had another scan and the results were near enough identical (not done on the same machine so not directly comparable). The AA would have been superfluous to requirements - calcium and vit D were quite adequate.
Only less than about half of patients on pred develop osteoporosis - and like cataracts it is very possible it merely happens sooner than it would have done anyway. I have nothing against AA if there is proven need - but many of us don't need it and monitoring progress is far preferable. AA has some very nasty side effects ranging from very upset guts to fractured femurs - it should not be handed out like sweeties.
Other changes included the common face bloating and fuzzy type sideburns / beard.
Tiny scratches bleed for ages and skin seems much drier than before - am using Double base which helps.
Gastrointestinal- it played havok with my stomach!
Peripheral vascular disease
Devon Lottie, Is that something you acquired since steroid?
Yes. I developed diabetes due to the steroids which then lead to peripheral vascular disease
Thank you, DevonLottie. Wow!
Anyone with vasculitis is at an increased risk of PVD - doesn't need to be as a result of diabetes.
I always assumed it was the steroid induced diabetes, not directly from vasculitis
It can be either - or both, but vasculitis can do a lot of damage when the inflammation is uncontrolled. That's the role of the pred for many of us - whatever its downsides.
When I had a flare a few months ago I was put on prednisolone, and had really bad heart problems I could feel my heart beating in my neck its beat was erratic and I felt as though my heart was coming through my chest, it also seemed to be jumping about and I have to say I felt really ill, and I felt ill enough with the flare .
I eventually returned to normal but not until I stopped the steroids. I would like to ask if anyone else has experienced this .
I had severe palpitations which were thought to have been triggered by i.v. high dose pred - but it wasn't, it was another i.v. drug that had made it really bad - i'd have been in ICU had there been a bed free! Once the atrial fibrillation was identified and managed I realised it had been there all the time I had had my autoimmune disorder and the cardiologist agreed it was due to the autoimmune problem having damaged the electrical cells in the heart.
Pred is blamed for a lot of things - but it isn't always the case.
Jackrussel, It's sooooo interesting that you mention this. I was in and out of A & E back in 2014 as a result of this (it sounds strickingly similar). Would you mind me asking which type of Vasculitis do you have? So, you haven't had any prednisolone at all since? It took me a while to realise that it was Prednisolone which was causing this "jumping". Thank you for jogging my memory.
I do have skin 'thinning/dis-colouration' but I am on a number of different medications-so difficult to tell if Prednisolone is the direct cause. I could list other 'problems' but I won't. All, in all, not bad considering that I'm still ALIVE!
This is an interesting one. Where about in the body are you getting your skin thinning? I had lots of skin thinning prior to my V diagnosis (without steroid).
It's one thing after another with having to take this medication
disturbed sleep but also shortness of temper
Wonderful stuff - I am sure it saved me .... but I put on lots of weight, suffered from insomnia, suffered muscle weakness and contracted cataracts. The latter was a blessing in disguise as, having been very short sighted for over 50 years, I now have almost perfect vision and just need some mild reading glasses!!!!
Yes i agree the cataract was a blessing in disguise i too had worn glasses since age 4. My last eye test before the op was +9.25 varifocals cost over £400 just for the lens, i now just wear glasses 1.5 for reading and of course the computer and they cost me 2 pairs for £99.
I was similar with varifocals costing about £500 in total. As the cataracts developed I believe it suddenly went to -13! I now use off the shelf, +1.25, readers for £10 - not perfect but I have not felt the need for a prescription pair to correct the minor astigmatism.
I've said many times I'd actually welcome cataracts - just having to have reading glasses would be wonderful and save me a fortune as it has you! And no sore bits on nose and ears...
I only have single vision lenses - I can't face variofocals and just remove my specs to read. I'm so short-sighted I haven't got the stage of my arms not being long enough!
There are 83 listed side effects and nobody gets them all.
There are unlisted,' steroid brain fog or 'treacle brain' and some people who have never used swear words find they do so whilst on pred.
Pred is the most powerful drug we have and it is keeping people alive from kiddies to Silver Surfers.
Double Base Gel for thinning skin.
Weight gain does go and have some sympathy for those that lose weight as the medics really worry if they cannot gain some.
Moon face disappears and your wrinkles come back - grrr
Hair Thinning - Folic Acid.
Mood swings lessen as your body adjusts to pred use.
And we can all answer polls with a smile.
Stomach problems / thinning skin and hair/ extra facial hair / tiredness/ bad sleep/ always hungry and eyesight not so good - but down to 7 started at 60 few years back - but hundred times better and almost leading normal life - lucky!!
I am easily bruised now. The thinning skin on my fingertips means playing the guitar is a definite no-no. I have worked with my hands all my life, but now the tenderness of my hands and fingers have put some restraint on that.... BUT... I am now almost pain-free in my body, which is an immeasurable advantage. I will keep taking the steroids; they are and have been a blessing.
My Mums comment about steroids is that she wishes she didn't have to take them. But she has to.
I take steroid tablets perhaps once or twice a year and a steroid asthma spray for 30 years but now when I have tablets, even enteric coated pred means I have GI bleed the last one was severe enough to affect my heart rate.
Acascular necrosis...one of the most dreaded complications. This is associated with steroids AND clotting issues. Since vasculitis can be associated with elevated Factor VIII levels, which I had, I got AVN. I have been on low dose heparin and the lesion in my femur is getting smaller.
Tara, I do so sympathise. I personally feel that "nobody wants to hear bad / scary stuff as it only happens to someone else except me" but no one wants to find out after being on Prednisolone without knowing the risks. You might be told "it's just you, you are just unlucky". These things do happen and let's talk about it! (That seems to be the idea behind this thread?) Thank you for sharing.
All drugs have adverse side effects. I believe that without steroids I would not have coped. When I finally came off them I had about 6 relapses over an 8 year period & the steroids made a significant beneficial difference almost immediately every time.
Just visited my Rheumy today and mentioned that my lower legs feel weaker of late especially if I walk up hillsor stairs, I have sixty to get up from streeet level to my flat. Stopping momentarily to let them rest helps and they are OK on the level. Also mentioned that I was getting sharp electric like shocks in my right foot at the base of the 2nd and third metatarsals where they join the foot proper. She thought it could be a Mortons Neuroma ( new one on me, never heard of it before) and wants me to have an ultrsound of my foot. Researching it later, it is possible that the compression stockings I have to wear may be the problem in constricting my foot and putting pressure on the nerve (I have broad shoe fitting and high arches). As for prednisolone we both agreed to reduce dosage to 4mg daily, it's a hard drug to come off of! But I do agree that it does get rid of wrinkles. Is that a bonus?
"it does get rid of wrinkles. Is that a bonus?"
I thought so! I have developed wrinkles having been down to 5mg for months and months. But I'm back at 15mg again - maybe they'll fill out again...
Then again , you could go for the weathered old salt look. Just need a oiled polo neck jumper and pea jacket to complete the look. I have thought of that for myself since I go sailing occasionally.
Been on Pred continuously for 33 years, often at a high dose.Also on Azathioprine same length of time, and Cyclosporin for 28 years. At one point I was on daily Cyclophosphamide for 9 years too . I feel more of my current problems are due to the side -effects of all these drugs, and sometimes it's hard to tell the sickness from the 'cure', but I know my extremely fragile skin, osteoporosis and muscle wastage is due to Prednisolone .Despite losing any initial weight gain( which was mostly fluid) I have never entirely lost my moon face and I have never felt like the same person because of it, as if the real me is trapped inside a stranger.
I had lots of white fuzzy facial hair, a short fuse and so much energy that I lost 30 lbs. I could not sleep at all and was prescribed Ativan for the 1 1/2 year duration of treatment starting at 60 mg prednisone after which I become totally dependant on the drug to sleep. I believe that prednisone plus cyclophosphamide saved my life and I feel lucky not to have more serious side effects ten years later.
Altho they have awful side effects, & I have ALL of the symptoms above, apart from the skin stuff, if it wasn't for steroids, quite literally I WOULDNT BE HERE!
Devils Tic Tacs?? Gift of Life for me..
I bruise very easily and have very dry patches of skin.
I have so many problems while on prednisone. Broken bones. Cysts developed on liver and damaged it. Fungal infection on arm from a scratch. A list a mile long. Personality changes. Mood swings. This the most evil drug I have ever taken. Tapering off now. Skin is dry and very flaky.
Except when I was prescribed a week's steroid for a chest infection in November 2015, I have not taken a high or prolonged dose since a flare in December 2011. However, at times I do get bacterial/virus infections and tend to have skin fragility and infrequent gastro-intestinal discomfort. The latter is usually because I've taken my morning Aspirin without taking the protective Lansoprazole tablet. My maintenance drug is Mycophenolate and I understand this tends to thin the skin, which I presume is the reason for my skin fragility.
Long-term steroid use and hippocampus shrinkage (atrophy):
ncbi.nlm.nih.gov/pubmed/170...
J Affect Disord. 2007 Apr;99(1-3):279-83. Epub 2006 Oct 9.
Effects of chronic prednisone therapy on mood and memory.
Brown ES1, Vera E, Frol AB, Woolston DJ, Johnson B.
Author information
Abstract
BACKGROUND:
In animals, stress and corticosteroids can be associated with both reversible and irreversible changes in the hippocampus. Changes in memory and hippocampal structure, perhaps in part due to cortisol elevations, are reported in some patients with mood disorders. Minimal data are available on the effects of long-term exposure to corticosteroids on the human hippocampus. We previously reported greater depressive symptom severity, poorer memory and smaller hippocampal volumes in patients with asthma or rheumatic diseases receiving long-term prednisone therapy than in controls.
Thin skin, bruise easily, oesophagitis and gastritis
Heartburn, unknown cause, maybe steroids or other medication? Also frequent nose bleeds after taking steroids for 18 mths, which I am now endeavouring to reduce.
I have been on steroids over 50 years. Never gained weight with them. I believe they saved my life. Now only take 5 mgs daily. Am in remission at moment. I do think steroids have caused All my other health issues
Hi Rosie, I am interested to know how you have never gained weight with steroids when other people put on lots of weight. I think that is really good. I'm sorry to hear you have other health issues because of them, but like you said, they saved your life.
Thanks suzy
Coupled with chemo, prednisone saved my kidneys and ultimately my life. That being said, we'll move onto side effects.
Avascular necrosis. AVN, requiring both hips be replaced. My teeth, and strangely the roots of my teeth, have begun breaking.
The following disappeared after I stopped taking the drug: heart palpitations, elevated heart rate (resting rate 125), severe inflammation (eyes, nose at highest dosage swelled shut), anxiety, swelling of feet and ankles, and of course, moon face and hump behind back of my neck.
Because of the avn, the mere mention of steroids can put me into a full blown panic. I pray Rituxan can keep MPA at bay.
Kidney stones
