Back to square one.

Bones, joints and muscles
1

Hi everyone, I have been reading all your experiences and most of my queries have been answered which I thank you all for. I am now in need a BIG MOAN so hear goes. I have GCA and heart problems and for the last eighteen months have been taking steriods started on 60mg got down to 7.5mg in July which I was pleased about but felt something was not quite right, thought it was the side effects of the reduction in steriods. No such luck, sent for blood test, you guessed it GCA full blown again back up to 40mg ,also given Methotrexate, folic acid, and doubled beta blockers. It was a hugh shock which sent me into abit of a depression which I think was more feeling sorry for myself than anything.

Now I have a mouthful of ulcers caused by the Methotrexate, which the Doc has now stopped and said we will find another alternative.

Feel abit better now I have had a moan. Like all of you the only thing we can do is keep battling on day by day.

Regards

Pekabar

2

Hello Pekabar

It's good to hear from you again but not so good to hear that you have had a full blown flare-up in the GCA. It is quite common to have one or two flare-ups in the first 12-18 months following diagnosis but I know that is of little comfort to you right now. What may be of some comfort, however, is that hopefully you will find that you can reduce the dose back down a little faster this time. I had two such flare-ups in the first couple of years and I can so relate to your feelings of depression and feeling sorry for yourself right now but you will bounce back.

I have found that a toothpaste for sensitive teeth such as Sensodyne is helpful for mouth ulcers, also bonjela can help, and avoid as many acid foods as you can to restore the alkaline balance - yoghurt should help here.

Best of luck Pekabar and when you feel up to it give yourself a special treat of some sort - hope to hear you're feeling better soon.

MrsO

3

Hello Pekabar

Sorry to hear of your problems I cant relate to all those problems as I only have PMR but in Jan I had a flare up and went from 5mg to 15mg to control it and I was very down Certainly wasnt helped by the awful cold weather at the time and feeling like a prisoner !!

I am now slowly getting down again (6.5) and am now trying mentally to go with the flow and accept that this will go one day

Mrs O understands how you feel as she has perservered and is getting there slowly It is very difficult with all the side effects also

I hope the mouth ulcers clear soon and its onwards and upwards ( or downwards on the doseage!!!!) for you

Best wishes

Mrs G

4

Pekabar

Can you answer these questions for me.

Originally did you have a Temporal Biopsy to confirm you had GCA?

When you had the GCA flare and your CRP rate went up, was anything else going on at the time?

Did you have the original symptoms or even one of them - that is headache on side, temple sore to the touch, jaw claudication, all the bones in your face aching, unable to chew?

What tablets apart from Prednisolone were you taking at that time.

I ask, because I have GCA and have also had two flares. But am now down to 4mg and about to drop to 3mg.

5

Hi Mrs O, Mrs G, Mrs K,

Thankyou all for your kind words and support.

I am feeling alot stronger mentally and keep telling myself to take one day at a time and I will get there. The mouth ulcers are alot better almost gone. Doc has stopped Methotrexate. I am now taking Azathioprine 50mg one daily as well as steriods, down to 30mg today but, pain in head still there.

Mrs K,

No biopsy was done, told it was too late.

Headache on side, more like stabbing pain in temples very painful. Loss of appetite, loss of energy. I knew something was wrong but, thought it was side effects from steriod reduction. Pain when chewing, Head pain waking me up at night. Eye ache its the only way I can describe it.

Other medication.

Bisoprolol Fumarate, Candesartan, Carbamazepine (taken for face pain)

Isosorbide, Thyroxine, Nicorandile, Omeprazole, Simvastatin, Tildiem, Prednisolone, Azathioprine, Co-codamol, Calcichew.

I had an eye test today and for the good news all ok. But advised to see GP about pain.

Hope this helps Mrs K.

I find it so much easier to talk to fellow sufferers than trying to explain time and time again this disease to others, its not their fault but I get fed up with, the fresh air will do you good or the sun will do you good, when I haven't got the energy to even think straight, here I go moaning again.

I will keep you up dated on the new drug and if it is working.

regards to all

pekabar

6

sorry to hear of the 'gca' i worry more about getting another attack of that than anything, and sorry to hear you have one. did you get a massive head ache as the start of it all this time around?. m.edwards

7

Pekabar

e-mail / pm me on this site please.

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8

Pekabar

I meant to add, read the side effects on the Simvastatin, one of them is muscle ache. Ask your GP to change the statin.

9

Hello Pekabar

I know that Mrs K will be giving you excellent advice but I just wanted to say how sorry I am to hear of all these problems you are having and especially that the steroids do not appear to be relieving your GCA symptoms. I wondered whether you may have been reduced too quickly from 40 to 30mgs but no doubt your GP would have checked your ESR and CRP markers to ensure that the inflammation was under control before reducing. Although I commenced on 40mgs when diagnosed, I know that some people are started on 60mgs or even higher to get the inflammation and consequent symptoms under control. I do hope that the new medication will give you some relief but meanwhile it's good to know that you have just had an eye check and all was well. Perhaps it would be a good idea to continue very frequent eye checks whilst the symptoms persist. Very best wishes, MrsO

10

Hi,

Sorry about your recent flare of gca. What a bummer...

I have crestor-induced pmr. Any statin can cause muscle aches, etc. My rheumy said, \"I don't like to interfere with patient's cardiologists but you are taking statins for something that MIGHT happen in the future. You have pain NOW and your quality of life has slipped. I recommend that you never take statins again. Find some other way to control your cholesterol.\"

Needless to say, I threw the crestor out.

Taking the crestor cost me big time - LOTS OF PAIN plus everything else!

This is my experience.

Hope your pain gets better. If your head is still hurting, increase the pred and see if it goes away.

Hugs,

PattyAnn

11

I too blame Crestor for my PMR. I had only been taking it for 10 days when I developed parasthesia in both hands and feet and deep muscle pain in shoulders and hips. I was fairly fit, going to the gym 3 times a week and yoga classes but now I am afraid to exersize. Both my GP and the consultant that prescribed the Crestor have denied that it could have caused the PMR, apparently it was a \"coincidence\". However the same consultant has said that I cannot take the Crestor again until my PMR is cured,to which I replied that it will be a cold day in that very hot place before I take another statin drug!!

In the 10 months that I have been on the Prednisolone I have only reduced from 15mg to 10mg and still have pain after simple things like doing the shopping, and I have put on 3 stone .I am wondering how many of us can trace this illness back to taking statins?

12

Hi Debra!

Funny how one of the main reasons for discontinuing Crestor during its clinical trials was muscle pain and weakness! And how \"all patients should be counselled to immediately report any muscle pain, malaise and fever\" - according to the notes for the medical profession. And there was a recall in its early days because of the muscle damage implications.

I have a minimally elevated total cholesterol and high HDL which accounts for most of the elevation, the LDLs are also a bit up. A GP looked at me quite strangely when I told her I'd take statins when that warm place turned into a skating rink! That was just before this latest pearl of wisdom emerged that dietary cholesterol has little effect on blood cholesterol levels (a fact I was aware of 30 years ago as a result of my physiology degree). I still maintain it isn't the fat, it's the sugar along with the fat that causes the heart problems.

There has been a massive lack of whole body physiology thinking over the last 25-30 years. The statins have effects on the mitochondria - and they have effects on all of the rest of the body since they are present in every cell as the energy supplier. It indicates a certain arrogance to say that the Crestor can't have caused your PMR - maybe many of the patients who have had to discontinue statins because of muscle pain did have PMR but that wasn't thought of. Heaven knows it's bad enough getting it diagnosed anyway. And it's worse in the USA than in the UK - and I'll lay odds most of the clinical trials were done there. The severe side effects didn't appear until it was released for use generally and were reported as part of the adverse reactions card system that is used once a drug is in use. Was your reaction reported by your doctors?

If you are now scared to exercise that will probably account for at least some of the weight gain - most of the weight I have put on was because I was so restricted in what I could do before I was diagnosed and the weight piled on as I reduced the gym activity and sat at home unable to do anything except eat the carbs I craved - I didn't know what I wanted, just I wanted something, every afternoon. That disappeared immediately once I started on steroids.

Is the pain you have after shopping localised? To your shoulders and back? I dare not carry anything far now without having discomfort afterwards - so I don't! Get the shop to help put things in your car and only remove small amounts at a time. Or do you shop in the market in Cambridge rather than in supermarkets? I find a backpack easier than carrying traditional shopping bags. Be careful using a shopping trolley, though. Unless you push it, the action of pulling it behind you is very bad for shoulders - and PMR is bad for shoulders too.

all the best,

EileenH