Tray

[pmrdec112014]

Hi.... I realise there are many side effects to taking long term steroids but I am wondering how many people have actually suffered them during and after treatment for pmr0 and if they have, which ones. I am aware that Kate Gilbert says in her book she developed diabetes type 2 a few months after coming off them. To date I have been on 15mgs pred for 8 weeks and 14 mgs for 4 weeks since pmr diagnosis in Dec 2014. Thank you.

[PMRpro Ambassador]

Everyone I know has experienced some - but which and how much varies dramatically. I have been on 4 different sorts of pred - each one has been different. With one I found weight redistributed, I didn't put much on though and didn't have many other problems. With another I put on loads of weight had muscle wasting and grew a beard as well as my skin disintegrating. The latest - have lost weight (38lbs), skin and hair back to normal and no beard.

Like everything else with PMR and pred - everyone is different.

[pmrdec112014 in reply to PMRpro]

Oh...I didn't realise there were different types. I am certainly putting on weight and I have noticed a moustache forming. I am naturally quite dark but never had THAT before though my daughter has to use removal cream in that area. What determined the different types you were on?

[PMRpro Ambassador in reply to pmrdec112014]

The first was ordinary white prednisolone tablets and then enteric coated pills (red 5mg and brown 2.5mg), all basically the same, in the UK. Then I moved to Italy where there is only Medrol (methyl prednisolone) which was what caused all the problems for me. Others take it without any trouble. Then I was offered Lodotra as the only other option here in Italy and I'm fine with that - everything back to normal, long hair again and have lost weight. It's approved for RA in the UK but it is very expensive so isn't generally offered at present.

I didn't just have a Movember - it was a full beard! I've also been white since I was 40 - the beard was dark! All gone now - I used my Braun epilator to remove it at the time. I still have the odd stubbly chin hair but it is far far better than it was, just one or two.

A lot of us have found being REALLY strict about not eating carbs helps with weight problems. I eat no cakes, pasta, rice, snacks - except as very special treats. I eat almost no bread, half a roll or 1 slice of German rye bread and that just a couple of times a week at most. No wheat at all - I'm allergic to something in it so it is no real hardship. Fish, meat, cheese, eggs and salad or veggies grown above ground. Over the last 2 1/2 years I have lost 38lbs in weight, I'm almost back to pre-PMR weight and I am still on pred. It can be done but you have to be strict with yourself.

[Trenny in reply to pmrdec112014]

Re facial hair - I have bought a 'Braun silk epil 5' from Boots for this. It pulls the hair out by the roots and I would thoroughly recommend it.

[oscar212]

I have got gca since 11feb 60mg I have put weight on its caused pain in joints also, it is worrying my sight has been effected focasing sore eyes ,but I feel quite confident in how its come down from esr 100 to49 take care josie

[AndyTheMac]

Hi Tray

I started on 60 mg Pred in September last year for GCA and started reducing in November. I'm now down to 25 mg. I think I've suffered every "side effect" the steroids can throw at me!

I developed type 2 diabetes at the end of November (insulin dependant). This made me angry that a treatment could give me such a serious condition. I've been insomniac since the middle of October (I never had sleep problems previously). Big weight gain including "moon face" look - 2 1/2 stone since the middle of December. I get severe depression and anxiety, although the anxiety has tapered off as I've reduced the Pred. Some symptoms, like head and neck aches, seem to be related to the steroid reduction. It's difficult to tell!

I haven't been able to work properly since the middle of September and find it impossible to look forward to anything. I used to enjoy food now that just seems like another medicine and something I have to think about every time I eat.

The mental effects of the Pred seem to have hit me the hardest and they are the most invisible. Except to my partner and children who are suffering at least as much as I am.

Sorry for being so negative but I no longer know how to be positive.

[pmrdec112014 in reply to AndyTheMac]

It is awful that you feel so miserable....Always remember there are lots of people you can talk to, at worst the Samaritans. It is certainly important to talk to someone and I know men are not always the best at doing that! I too am still coming to terms with the PMR and still get down at times particularly as I lost 2 stone a couple of yrs ago maintained it and now seem to be putting it on again since steroids. I can see I am going have to be very rigid in what I eat and also I am finding I can not be as physically busy as I used to be and still want and have to be! It is always better to know you are not alone in this and at least on this forum we know we are not! Thank you for replying so openly.

[Celtic PMRGCAuk volunteer in reply to AndyTheMac]

AndyTheMac

Like Sambucca, I have been in exactly the same position as you are right now, with the same symptoms, low spirits and treatment side effects, but, like her, I have also recovered. We do so sympathise with how you are feeling, but you will get better. You are still in quite early stages of the illness, and yes it is life limiting for a while but something that you will recover from. No need to apologise for being negative to any of us on here - we all so understand. And as for no longer knowing how to be positive, there are already signs that you are doing just that by joining this forum for a start. I don't know where you live but there might be a support group that meets in your area - meanwhile we are here on this virtual support group so keep offloading whenever you feel the need - a trouble shared is a trouble halved.....!

[Green_girl in reply to AndyTheMac]

Andy as many of us have said, depression is common with this - and we all really sympathise with you - and can agree with you wholeheartedly. These conditions suck!

I too had awful depression and was in so much danger of doing something really extreme, my GP put me onto anti-depressant. I took very little - just half a tab per day, but enough to keep me just above depression. I weaned myself off them fairly quickly (best to do). I also had something to help me sleep - and again got off that really quickly. I combined both these chemical sticking plasters with their side-effects with talking counselling and with an advice sheet from the GP on sleep.

The tabs helped me to re-find some of my natural resilience and the strength to start to help myself because they seemed to allow me to be a tad hopeful (the sleep probably helped there too. No sleep=brain unable to function). The talking counselling was what I think really helped.

CBT is another type of counselling offered via an introduction from your GP - but I know it is a very overstretched therapy - and needs you to be able to work on yourself. You need to discuss this with your GP - as honestly as you have discussed it here. As I was beyond that I paid for talking counselling. Initially it was exhausting and emotionally painful - and did require some work, but at a gentler pace - there was lots of writing in a notebook, crying and hard things to learn about myself. It has given me lots of techniques I can use even in 'normal' life, so was worth every penny it took, really! The way I describe it is that it helps you to start new filing cabinets for reactions to your experiences, rather than going back to your usual ones e.g. this always happens to me, or, the result of this is usually that..... etc.

My husband was alarmed by what was happening to me - but he went with me to appointments and also kept an eye on me. It was hard on him - in fact heart issues developed and he ended up in hospital. Again talking was so important, but I found it easier in front of the GP! I guess a third person there takes some of the stress out of it......

If you are able to get outside when it's dry and not too cold this will also help - but you got ill in Winter and the lack of sun hasn't helped you at all. By the way - are you taking vitD3?? If not you should be. it is important for mood, as well as tons of aspects of your body.

Please seek help. Please don't keep going downwards. The drugs have changed your life horribly and irrevocably, which is so unfair. There is a way of living with all of this - but you cannot do that journey on your own.

I am now free of PMR after three years - it has left its physical marks (no way as bad as yours) and I have to come to terms with arthritic developments that might not have attacked me until much later in life, but I'm so happy to be finding my 'new' way. I wish you every success to find 'Andy Mark II'!

[suzy1959 in reply to Green_girl]

Green girl- thank you for your endorsement of counselling as a useful resource! I am a counsellor and I have had PMR for 3 years. Whilst I don't think the Pred. has affected my mental health( thank goodness), I am going back into therapy for a while as being this ill for so long is getting me down and I feel in need of some support just now for various reasons. It can be wonderful to talk to an interested and skilful stranger- you don't need to hold anything back for fear of upsetting the other person for one thing.

I have however had lots of other unpleasant side effects from Pred. too- weight gain, insomnia,itchy skin,buffalo hump, thinning hair and facial hair,blurry vision and dry eyes,- these are just what I can think of now- oh and......forgetfulness!

[jinasc]

AndyThe Mac

Andy don't apologise for being negative, when you first encounter GCA it is a daunting prospect, but you can get deal with it, it is finding out how and what suits you.

I know you have not suffered every side effect it can throw at you, there are 83 and no-one gets them all.

Is it possible you live near a support group? Have you visited the 4 websites run by PMR GCAuk, PMR&GCAuk North East Support, PMR GCA North West and PMR Scotland.

There is a wealth of information on those websites and people who are willing to talk to you.

I had GCA. Once I came to terms with it, I was able to cope and so can you. Reach out for help it is available. If you do nothing else the DVD called 'You are Not Alone' and watch it.

[jinasc]

Tracy

I had GCA and was on 60mg to start with and was then on them for 5 years (reducing slowly). Yes, I got a moon face, put weight on, had the odd hair sprouting. However, my nails were stronger and I was able to have nails I loved for the first time in my life.

Then the moon face disappeared after about 6 months and back came the wrinkles. I did not develop Diabetes and so far after being off steroids for 3 years I am fine.

Not everybody gets the same side effects, we are all different.

[pmrdec112014 in reply to jinasc]

Well that sounds positive so I will hold on to your experience. Thank you. I have put on some weight and I keep checking for the moon face. I am going to try and be far more rigid with what I eat from now on... think some of the gain has been due to a bit of negative thinking!

[PMRpro Ambassador in reply to pmrdec112014]

When I was on higher doses of pred, like Sambucca I had beautiful nails for the first time in my life. Now I'm down to 4mg my nails have gone back to the way they always were!

And like her - 37lbs down in weight - I have the wrinkles that fit my age...

But at 4mg - the PMR is well controlled so far.

[pmrdec112014 in reply to PMRpro]

Thanks PMRpro.... your posts are always invaluable

[Wells77]

Hi Maybe I have been lucky ,I started prednisolone for PMR 23 months ago and side effects practically non existent. Last 2 months a little increase in facial hair and skin thinning but hey that can also be ageing process. Steroids were for me a miracle. I lost half stone,have an active lifestyle, participate in walking dancing swimming. Have reduced very gradually to 3mg. I am apprehensive about the final reductions in case it flares, especially when I read of other peoples difficulties. We could do with more reports from success stories. Keeping my fingers crossed and try not to worry. Best wishes

[Janbu in reply to Wells77]

As a newbie your post has given me a big smile on my face and hoping I might be like you..hmm the power of positive vibes, love it!

[Hidden]

After 25 months I came off Pred completely in Oct 2013. At the higher doses, ie above 10mg I had difficulty sleeping but that went. I had to have the enteric coated Pred as it was the only type which my stomach would tolerate. This made the reductions more difficult as the 1mg ones are uncoated only. I would advise slow reductions as advised elsewhere on this website.

Now I am much more active and pretty much back to where I used to be with just a few more very mild aches but then I'm that much older now. My weight is exactly what it used to be but I didn't gain much anyway. I do not take any drugs now.

I think that I have been lucky as I did not have too many side effects and they were only short term.

[pmrdec112014 in reply to Hidden]

That's excellent news PatM. I am pleased for you that you have won over this horrible THING!. Your success is something to hold on to. Thank you.

[jinasc]

Weight gain, try the 5:2 diet. It seems to work and Waitrose do ready meals for the 2 days.

[Charlie1boy]

Hi Tray,

Your post made me think about the side effects of preds, and after 2 months of a fairly high dose for PMR (currently at 17.5mg) I think I may have escaped the worst so far.

No weight gain, or moon face,but I have been very strict with diet. No chocolate, no biscuits or cakes, and basically no desserts other than fresh fruit. Minimal carbohydrates, but I reckon I can't cut them out altogether.

The worst aspect of PMR, and the preds is that I find I am almost perpetually tired, and, if I try to do a full days activities, then the next day is a total write-offI

I would like to know if this is caused by the steroids, or is it a symptom of PMR?

Also, does this tiredness/lethargy get better as I taper the preds down?

Depression has never been an issue for me, but my wife tells me I am more negative about myself now than she can remember!

Am I being too impatient?

[pmrdec112014 in reply to Charlie1boy]

Thanks Charlie 1boy... Me thinks I haven't been strict! But I believe that has been down to feeling low. I think I have felt that way mainly due to the sheer fatigue I have and still am experiencing. I am still working 4 days a week and am used to rushing around being always on the go and now I find as you say wiped out the next day if I do too much which normally would be very little. My Gp told me some suffer with fatigue and some don't and it should improve given time!

[baldbill]

Yes, Prednisone can cause Diabetes because it raises blood sugar plus BP and has many other serious side effects in addition to purple blood spots on the forearms. I tapered down from 20mgs of Pred over a three month period and my GP wanted a 5 month taper. Currently I am not taking Pred and would prefer not to due to the risk of diabetes, bone loss, cataracts ect.