My Experience with PMR & Steroids.

[Pinkladysuki]

This is my story with PMR and Prednisone. I am 58 years young and on 26th January 2015 I was scheduled for a pre-planned op on my foot to remove my bunion. This was in fact how I stumbled on this brilliant website and joined the Hallux Valgus (Bunions) forum. In December 2014 I had to attend the pre op assessment and was told I had to stop taking HRT and Naproxen. These were the only pills I took and the Naproxen was for my knee which is showing signs of arthritis. I was a very healthy person back then and apart from a really bad dose of flu in December 2014 I kept well. I was slightly anxious about stopping both of my pills however my GP said it was fine to stop the HRT immediately.

Well…within 2 weeks I could barely move. I couldn’t turn my head, lift my arms, turn over in bed or even squeeze toothpaste from the tube. Getting out of a chair and in and out of the bath was nearly impossible without help. I was in agony and really scared. I went to the GP as I was convinced it was caused by stopping the HRT with no taper and add the flu into the mix I thought everything had just gone haywire. I was also 3 days away from my bunion op and didn’t know what to do. The GP advised me to go ahead with the op and he would investigate my problems after that.

The morning of my op I could barely get out of bed, I was in so much pain and so stiff. At the hospital the consultant was going to defer my op, but left the decision up to me. As I had organised time off work and everything indoors to accommodate my potential recovery I decided I would go ahead with it.

I woke after the op and was amazed; I wasn’t in pain and could move everything! I’ve since been told this was because of the anaesthetic and pain block I had been given. I left the hospital like a new woman even though I was on crutches! I went back to work early after 2 weeks as I felt so well. I got a few niggles but put it down to the orthopaedic shoe I had to wear.

Then I burnt and crashed. I woke up one morning in February and was totally back to square one. I couldn’t move again and my body was in pain all over. I went back to the doctors where he started me on Co-codamol. They didn’t help so he gave me Tramadol. They didn’t work at all so I went back again and he talked me into Amitriptyline. These also didn’t work so I stopped taking them. He then sent me for blood tests and I got an appointment to see a consultant at the Muscular Skeletal Clinic. During this time I was taking nothing although I had gone back on the HRT. The consultant at the MSC Clinic said he was sure I had Polymyalgia and was going to recommend to my GP that he prescribe me steroids.

Well I was gutted as I had read all the horror stories about the side effects of steroids, The Consultant said I would not get any side effects as the starting dose was too low. (15mgs) well he’d not done his homework or research properly to make a statement like that. I went straight to my GP as the pain was intolerable and he prescribed me 15mgs of Prednisone for 1 month, then to taper to 12.5mgs for 1 month then 10mgs for 1 month. Thereafter I was to taper 1mg per month. Approx 48 weeks in total on steroids. He also said it was unlikely that I would experience any side effects as the dose was too low.

The steroids took 2 weeks to work and I must admit I was very grateful that I was no longer in pain. For about 4 more weeks life practically went back to normal. Then almost overnight things changed.

My face became bloated & my eyes dark & sunken. A huge fluid filled hump appeared on the top of my neck that extended down my back. My hands and feet were so swollen with fluid. I had palpitations, bad thoughts and a vile temper. I sweated like a pig, it literally dripped off me. My sight became blurred and after 2 eye checks I have dry eyes and my prescription needed changing. My skin became dry and blotchy and I had a lot of excessive hair growth on the sides of my face and under my chin. My stomach changed shape. The worst thing though is the constant stomach problems. It's like IBS. I also have chronic tinnitus. It drives me mad. I am exhausted all the time and just everyday things like hovering or changing the bed leave me done in for the rest of the day. I look ill. The final straw though was to see my hair shedding everywhere. I didn’t actually go bald but my hair did thin and became very dry and brittle.

I felt utterly depressed and so miserable. To be in pain is hard but to see yourself change so much in the mirror and all the other side effects, especially being in and out of the loo all the time made me want to just disappear. I am not vain but I do like to look nice and I take pride in my appearance. Unfortunately cutting off my long hair and putting up with all these terrible side effects was not an option for me. It was all ruining my life.

So I made the decision that I was not going to continue taking the steroids. My Doctor wasn't happy about this however he was cooperative & with the advice of the rheumatologist they said I could drop 1mg a week from 10mg my current dose to zero. They monitored me with blood tests.

I was fine with the fast taper until I got to 3mg & I felt terrible. Every part of my body hurt. I went to Cornwall for a week & had zero energy. It was such hard work with all the extra walking. It was so hilly where we stayed & at times I was in agony just walking on an incline. My legs & feet were so swollen. It’s also so difficult to know whether it’s a flare or the tapering that’s the cause. I didn’t moan though as this was my choice.

I continued to taper to 1 mg despite horrendous pains all over. I've been in agony on the days I work as I’m desk bound and get very stiff. It’s easier when I’m at home as I can move around more and also rest if I need to. I'm convinced that its withdrawal symptoms though as I gave in and took 2 co-codamal and it did relieve the pain which it definitely didn't in the early days with the PMR.

I have started back on naproxen for my rheumatic knee. I was taking this pre PMR. The relief has been amazing and I can bend my knee again. I took my last dose of prednisone on Sunday and mentally I feel so much better.

Knowing now what I do about prednisone and how it affected me I will never touch this toxic drug again. It changed me as a person, how I looked and how I felt.

I have make a concerted effort to lose some weight and start doing some gentle exercise. I hope the chronic tinnitus eventually goes and I’m assuming the hairy moon face and buffalo hump along with the frequent loo trips will go as the drug leaves my system permanently.

I know a lot of people won't agree with what I have done but we are all different in how we cope and handle our illness. I know I feel so much more in control now I am off the steroids. Once I made the decision to fast taper my husband said I came alive again. My work colleague said I am brighter and bubbly again. I feel more able to cope with everything. The pain is tolerable so far but still there. I have the birth of my first grandchild to look forward to in September, so a reason to keep going.

This has been a very long rant; maybe I should have started a blog! I will update if anyone is interested to let you know what happens in the next few weeks. Good luck to everyone in their recovery from this horrible illness.

[babssara]

Hi, I could not believe your story. It almost mirrors my experience so far. Pain swelling various joint, scalp pain, dizziness, balance problems, clumsiness, complete exhaustion for 2 years, back and forth to GP, various ideas and treatments, pain killers, NSAID, anti depressants etc etc. December 23rd 2014 fell from top to bottom down stairs (lunchtime - alcohol not involved I might add), shattered shoulder, broken arm, broken ribs, head cut open. Shoulder and arm pinned and screwed. Bed bound 6 weeks. Since then never recovered from all symptoms I had before the fall.

One of the screws in my shoulder has moved and is trapping the ulna nerve. Surgeon said he would remove it but not the rest of the metalwork as my bones are too brittle (first I had heard). Went for pre-op, bloods came back skewiff. Anaesthetist said I couldn't have op until investigated.

Pain in joints, hot andcswollen. Next 3 bloods, ESR 79,78 and 38. GP thought it could be Palindromic rheumatism so I went to see Rhuemy privately. From smptoms he diagnosed Palindromic but also Giant Cell Arteritis and he suspected osteoporis. He has arranged CT body scan, DEXA scan, and more bloods. He put me on 30mgs Pred, and Adcal and told me when he got results of all tests I would probably have to go on DMARDs.

30mgs Pred contained pain and inflammation for two weeks, the pred honeymoon I called it, but then heyho, another flare up. In agony. GP increased pred to 40mg and 90mg Arcoxia. Its all still a waiting game. Don't know when I will have my op. Still trapped nerve right arm, can't grip, extend my shoulder, put my hair up (which, like you, is also falling out and dry).

What a bu**er this illness is.

Hope you continue to feel better and able to enjoy your grandchild (when it arrives). As you say, we all have to deal with this condition how we see fit.

Babs x

Don't know when

[Caro12line]

Thank you for posting and hope everything goes well Pred free. I was put on 60mg of Pred in January for suspected GCA. After numerous tests/scans it was decided (by my Rheumy, I also am RA+ so got a quick refferal) he decided it was t GCA. Tapered off Pred to 10mg and head pains returned. More tests and scans including a PET CT which found GCA in my Aorta. So in March back up to 60mg with a very slow taker programme. And that's when my problems started. I know I needed the Pred but the side effects are killing me! Hair loss, no hair growth in armpits or on legs. Peachy hair growth on my moon face and arms. Huge bloated tummy. Pulsating tinnitus, insomnia, fatigue, sweating. I have a sweat rash under my boobs which is infected and antibiotics can't clear. I have high blood pressure (more meds) high cholesterol (controlled diet) high blood calcium level (no Calcium supplement ,increasing risk of Osteoporosis) and now I am Tacycardic and on Friday have to have a 24 hour ECG monitor fitted. Mood swings and depresion (not sure if this is a side effect of just the feeling of helplessness of all the add on problems). My social life is at rock bottom, if I plan something I usually have to cancel because I just can't do it. I have had to go down to 2 days a week at work because that's all I can manage. My life is in tatters! I am 58 and before January I was fighting fit and full of life. The only plus side is I am down to 10mg so hopefully over the next few months things should get better. But even if things go well I am still looking at a year (on my current taper) before I can come off Pred completely.

[tina-shelley in reply to Caro12line]

Hello Caroline, for your sweat rash under your boobs try a fungal cream. I got a sweat rash in the same place and used faltering gold cream twice a day for a week, rash all gone. Regards, tina

[Caro12line in reply to tina-shelley]

Thank you Tina. I will try that x

[tina-shelley in reply to Caro12line]

Oh Caroline I've just seen my post, the powers that be obviously can change a branded medical product. But judging from your reply you know what I'm talking about. Basically any creme for sweat rash, fungal infections will do but the d..........rin gold is definately the best. Good luck, tina

[Caro12line in reply to tina-shelley]

Lol... When it first appeared I tried Sudocreme ... But that didn't work. It wasn't until a routine Blood test when GP said my WBC count was high so I must have an infection somewhere. Nothing I could think of and then showed her the rash and she prescribed antibiotics and a moisturising creme.. It is slightly better but won't go. Just irritates when wearing a bra... So when I can I go bra less! X. Thanks again

[PMRpro Ambassador in reply to Caro12line]

I had a rash of that sort and in the same places when my PMR first started and although antifungal creams did help a bit what got rid of it altogether was removing wheat from my diet. I realised that it went away when I tried an Atkins-style diet to try to lose weight and returned when we were on holiday in Italy and I was eating pizza and pasta again! It isn't gluten - I can eat rye, barley and spelt with no problems. A coeliac specialist thought it was probably associated with the autoimmune part of PMR.

Cutting carbs drastically has also allowed me to reduce my pred-gained weight back to pre-PMR levels even though I am still taking pred. Some weight gain was due to PMR stopping me exercising, the rest was pred and I have lost 19kg altogether.

[Caro12line in reply to PMRpro]

Thanks PMRpro a food allergy hadn't crossed my mind. I have always had a healthy diet, and never had any sort of food allergy but the GCA or more likely the Pred has messed my body up in so many ways a new food allergy is definatly worth exploring. I grown my own fruit and veg but our meals have a distinct Itallian slant. I eat a lot of pasta and rice. Because of the high blood calcium and high blood pressure and high cholesterol I have already "exchanged" fats, salts etc in my diet. Where will it all end! Drink water and take Pred seems to be my best option! I will discuss this with GP on Wednesday.. She is great and has been on Pred herself for Asthma so understands many of my problems. x

[PMRpro Ambassador in reply to Caro12line]

Definitely not pred in my case - long before I was put on pred...

[northants in reply to Caro12line]

Hi Caroline i have had this problem before PMR and I use Boots medicated talc every day and it keeps it at bay . I had it so bad at one time that it bled I tried different creams but this is drier and works for me

[ballyboy]

thank you for your story i am on 10mg of prednisolone and have a lot of the side effests you have but my doctor will not let me come off them.i am on them for 10 years go down to 3mg and i have a fiare up again .do not know what to do .i am 68.do let me know how you get on .

[PMRpro Ambassador in reply to ballyboy]

Then you probably need to remain on about 4mg long term - some people need a low dose of pred for many years, occasionally even for the rest of their life. By identifying that lowest dose that manages the symptoms and not provoking flares you don't yoyo the dose which also helps with minimising side effects.

I have also had PMR for over 10 years, for 5 years I managed it without pred as noone would diagnose it. Now I am on 5mg, trying reducing to 4mg again, and am well. I have lost all the weight I gained by cutting carbs drastically, I feel well and look well - and have just done a 3 week trip to China with no problems at all. Pred isn't all bad.

[ballyboy]

thank you for your story i have a lot of the side affects you have .i am on 10 mg of prednisolone trying to get off them for years .i am on them for over 10 years get down to 3mg and pmr comes back .i do not know what to do .i am 68 .

[ballyboy]

thank you for your story i am on 10 mg now .have been trying to get off them for 10 years .each time i get down to 3mg my pmr comes back and i can do nothing .i have a lot of the side effects you have but my doctor will not let me come off them.please let me know how you get on .i am 68

[jinasc]

I can see that quite a few of you are having problems reducing your pred. However you can email PMR&GCAuk North East Support and ask for the two reduction plans (they a free) and see if they will help the way they have helped others.

There is also a booklet called 'Living with PMR & GCA' written by patients for patients,

"Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago. I do hope PMR&GCA North East will be able to make it widely available. Worth whatever it costs." (This is on another thread on this site).

It actually costs £5 which includes postage and packaging.

Finally, coming of pred is everyone's ambition but a word of warning, PMR left untreated can and does lead to GCA (not in all cases but frequently enough) so watch out for GCA symptoms because no-one wants that to happen, as if you don't have pred then you can lose partial or total vision and once that has gone - its gone.

[lynne99]

With regards to the rash. Take care, prednisolone made me diabetic and one of the first symptoms was a rash that would not heal. Please get your bloods tested to make sure.

[PMRpro Ambassador]

No idea - you'd have to try it yourself. But all my pred-associated lumps and bumps have melted away.

[Pinkladysuki]

Thank you for all your comments. This is my update approx 3 weeks on:

Update Saturday 22 August 15

Well I'm about 3 weeks off steroids now. I'm much better mentally and more alert. My face has gone down and also the hump. My hair is still shedding however I have been told that this is also a side effect of coming off steroids. Catch 22 really! I still have constant tinnitus that shows no sign of going. I've also still have stomach problems. The worst of all is the chronic fatigue. Far worse than ever before. Just getting up, showered & dressed is exhausting. The doctor said this is all "normal" for coming off steroids.

Pain wise I'm back to square one and then some. The pain is different this time. It moves around and is sharp and stabbing. I sometimes experience a sensation of something hot flooding through hands. I do get some relief from pain killers but am loathe to become too dependant on them.

My doctor has said my pains are steroid withdrawal. He's suggested I take up swimming and yoga. Fine just tell me how I haul my own body weight out of the swimming pool when I can't even lift the kettle or iron. As for yoga, I can't get on the floor! Bad news is he won't let me continue to take Naproxen which was for my knee & definitely helped. I feel like my last crutch has been taken away.

I have bad days and worse days. The thought of being like this for any longer is so depressing. The alternate to take steroids & put up with the side effects is even worse.

Well today is Wednesday 26 August & I've reached rock bottom. I was awake most of the night with searing pains in my wrists & hands. My knees are also bad. The pain was beyond unbearable. I don't know how I've got into work today as I feel sick & am so tired.

I've made an appointment at the Doctors for tomorrow but my doctor is not in so no idea who I'm seeing & not sure where to start when I see them.

What can they give me for this hideous disease other than steroids that I really don't want. Do I carry on with just existing hoping it will go away eventually or do I succumb to steroids, lose most of the pain but gain all the vile side effects I had before and some still have.

[knit1purl2 in reply to Pinkladysuki]

PinkLadySuki, I do have a suggestion on the yoga. I am in the US and my local fitness center (and the local Senior Center) have chair yoga. Due to knee replacements, I have a harder time getting down on the floor and up again. The chair yoga uses two chairs - one to sit on and the other in front of you. I have taken these classes and they are very helpful. You do what you can and the instructor gives suggestions on how to modify if you are unable to do the exercise. You might also google it as I think there are dvds available. Good luck to you.

[Pinkladysuki in reply to knit1purl2]

Thank you, I will definitely have a look at this.

[Pinkladysuki in reply to knit1purl2]

Hi again knit1purl2, I have just had a look on Amazon and purchased both book and DVD! Thank you again for the info x

[knit1purl2 in reply to Pinkladysuki]

Good luck.

[PamelAnneCT]

I wish there was some other way to treat/deal with this horrible disease. Steroids are the only course of treatment for PMR. It is sad that there isn't another treatment that works, especially in these modern times, but there isn't. The side effects are horrible, but the disease is worse. It's a tough choice: quality of life vs. side effects of treatment. I fear, from my 2 months with the disease and reading many stories from others, that you will have to make this choice. I realize now that I had the disease for quite some time before being diagnosed and it laid me flat many times. I too hate the moon face and weight gain; but I won't be totally incapacitated by an illness, I refuse to go back to where I was when it was diagnosed. And I am hopeful that as I taper down, the side effects will taper down too! Sending hugs.

[Pinkladysuki]

Thank you for your comment. I know deep down that I will have to face up to it that steroids are the only treatment. I know from when I was on them the side effects did not go away for me as I tapered. I still have a slight buffalo hump and fluffy face. the tinnitus drives me crazy and this also came on with steroids. My moon face has gone which was nice to see "me" again.

My Doctor thinks I should give it another few weeks to see if the pains go away and are to do with the fast taper. The trouble is they are so debilitating. I have just started to "warm" up and can actually walk properly for the first time today. My hands have also eased up although I still cant grip or lift anything.

From early this morning though it's a huge improvement as I couldn't even lift a hairbrush. It's a good job I have my own office!

I wish you well on your journey and return your hugs x