The pred seems to be effecting my tendons in elbows, one knee and hands. Any advice would be appreciated. Pats.

[nannyjc]

Hello Pats,

I can't really help you I'm afraid as fortunately I haven't had any side effects from prednisolone myself. I've been on them for 3 years, having reduced from 30mg - 0mg 3 times now only for all my symptoms to recur every time. Good luck with your treatment. Nannyjc

[Hidden in reply to nannyjc]

Hi Nannyjc,

Nice to hear from you. I would say that you are so lucky not to have any lasting effects from pred. I hope its as good for me. I must say the steroids were a godsend in the beginning, but they have caused quite a few side effects with me. Saying that, all my friends seem to think I look well, although it was only my family who saw me when I was at my weakest and both my daughters were reduced to tears. I think I looked as if I would 'pop my clogs' the next day. Now I am feeling pretty good, but my physical strength is much reduced. I drop to 7.5mg next week. Fingers crossed.

Good luck to you too, you deserve it!

Pats.

[BromleyPen]

Hello Pats

I think it is more likely that the tendonitis is a symptom of the PMR rather than a side effect of the prednisolone.

My PMR started with tendonitis in left foot for about three months. That stopped miraculously overnight but then my left arm started to have similar pains. Within 24 hours I had pains everywhere - shoulders, back of thighs, arms - and that was the start of the PMR last November.

I reduced my prednisolone dose of 15mg (started Nov 2011) to 10mg but the tendonitis in my left foot/ankle/leg returned plus I have constant tingling in two fingers of my left hand with a third finger that goes into a cramp if I use it to open a jar lid! I have increased to 12mg and it is slightly better.

I see a rheumatologist on Monday so hopefully I will find out more.

I would suggest you see you doctor or rheumatologist as maybe your prednisolone dose could be adjusted.

All the best

Penny

[Hidden in reply to BromleyPen]

Hi Penny,

Thanks for the interest. You could be right, but in my case, even in the beginning when the pmr was at its most painful, my tendons seemed fine. I think that loss of muscle strength and bulk may be effecting them. If it gets too bad I take 2 ibuprofen. They do the trick. I am desperately avoiding going up on the pred. I've just got over shingles and I know pred is probabley weakening my immune system. My rheumy is pleased with my progress and has given me the o.k. to take ibuprofen now and again. My pmr is almost asleep, or so it seems. I am on 8mg of pred and wiil try 7.5mg next week.

Good luck, Pats

[BromleyPen]

Hi Pats

Before I was diagnosed with PMR I did take ibuprofen and paracetamol for the tendonitis and I was hoping that the doctor might say I could continue with that as I too really didn't want to take the pred. I have been trying not to take anything else - I have been given alendronic acid and some calcium tablets to take - but maybe after my visit to the rheumatologist I might try some ibuprofen if it is working for you.

I think shingles at the moment would finish me off Glad to hear you are over that.

All the best

Penny

[Hidden in reply to BromleyPen]

HI Penny,

Get advice from your rheumy. Also, hrt works for me as far as my bones are concerned. I know it has risks, but oestrogen is natural and keeps our bones strong until the menopause. It also has extra benefits. It helps your skin stay strong against the damaging effects of pred. So many women are scared stiff of hrt. I wonder why. So many women develope auto immune deseases after the menopause. Far more than men do. Men don't have a true menopause, do they?

Fight on.

Pats.

[BromleyPen in reply to Hidden]

Thanks Pats. That's a thought. Will ask rheumy tomorrow about HRT. Will keep you posted.

Penny

[Hidden in reply to BromleyPen]

Hi Penny,

Go for it girl.

Best of luck,

Pats.

[Polywotsit PMRGCAuk team member]

Hi Penny - how did you get on with the rheumy? As far as the tendon and ligament problem goes, ladies, there is evidence that if you are on long-term steroid treatment this does have an impact on your 'soft tissues', and can contribute to pain from 'rotator cuff syndrome' in the shoulders especially. I had this once I came off the steroids and it was really painful. I found an osteopath was extremely helpful in teaching me exercises to increase my range of motion in my shoulders and also my strength. I'm glad to say that it did get better, but it took over a year of perseverance. Now I am almost back to how I was before I got PMR, and might even go back to salsa classes! :-)) For ages, raising my arms was just out of the question.

[BromleyPen]

Hi Kate

My ankle and foot pain started last July/August and continued until sometime in October/November when I was then diagnosed with PMR. It stayed away initially when I was put on 20mg of prednisolone but returned when the dose was reduced. It has remained with me since. Between July and November last year I had some physio but this made it more painful. I was thinking of doing a pilates class but wanted to have a proper diagnoses first. I don't think I would have ever mastered salsa .... not even at the best of times!!!

The rheumy I saw was 'efficient' - it would have been good if she had smiled just a little, just once!

She told me to stay on the 12mg pred (I had increased it from 10mg since seeing my doctor as the 10mg really wasn't working).

She said she thought the pred was keeping the PMR under control but sent me for a number of blood tests and an xray of the back and legs (it was only when I got to xray I knew about the back so not sure why as she hadn't mentioned it or asked me any questions). I need an ultrasound now at a different hospital so I am waiting for an appointment to come through.

The rheumy also asked me to make another appointment to see her in two months. I asked if it could be sooner but she said the tests would take a while to come back. I find it very hard to believe that results could possibly take this long in coming! When I reached the receptionist to make the appointment the earliest available was in August.

While I was with the rheumy I asked if it would be quicker to see her privately. I didn't really understand her reply so I asked again at reception. She doesn't take private patients. I have health insurance cover so I am thinking of trying to find someone once I have the results of all the tests - assuming that I will be allowed to have the results to take with me. I feel frustrated not to have some answers a bit more quickly.

She prescribed ibuprofen gel for my ankle and foot. I have been trying only to use this at night as the pain keeps me awake. I think there is a marginal improvement in sleeping.

My next plan is to investigate private rheumatologists in my area. Do you know if there are lists anywhere?

Best wishes

Penny

[BromleyPen in reply to BromleyPen]

Nothing really has changed on how I feel but thought I would update my progress with being tested.

The rheumy is being proactive which is very good. She has arranged for me to have an MRI scan next week and also a further blood tests yesterday. I haven't seen or spoken to her and in the letters I received there are no reasons given for these extra tests.

However, I have looked up the blood tests - Anti ccp-Abs

Ds ANA, C3, C9 and these seem to be for lupus. Hopefully this is to eliminate the possibility. Has anyone else had these blood tests?

A second cousin has had lupus since she was about twenty but as far as I know no-one else in the family has. I am interested though in the possibility that there is a connection between lupus and pmr. Does anyone know of one?

My next appointment with the rheumy has been brought forward to July but this depends on the blood test and MRI results being back in time. Fingers crossed.

[BromleyPen in reply to BromleyPen]

Nothing really has changed on how I feel but thought I would update my progress with being tested.

The rheumy is being proactive which is very good. She has arranged for me to have an MRI scan next week and also a further blood tests yesterday. I haven't seen or spoken to her and in the letters I received there are no reasons given for these extra tests.

However, I have looked up the blood tests - Anti ccp-Abs

Ds ANA, C3, C9 and these seem to be for lupus. Hopefully this is to eliminate the possibility. Has anyone else had these blood tests?

A second cousin has had lupus since she was about twenty but as far as I know no-one else in the family has. I am interested though in the possibility that there is a connection between lupus and pmr. Does anyone know of one?

My next appointment with the rheumy has been brought forward to July but this depends on the blood test and MRI results being back in time. Fingers crossed.

[MoiraCT]

Hi Pats

Like pennyc, I think this might be down to PMR. As you know, I'm not on steroids. I googled tendonitis, and I would say the description applies to my shoulders and upper arms, less so hips and thighs. I do sometimes have problems with my hands. At the start of this, when picking anything up from the floor was impossible, it seemed to match the amount of stuff I dropped.

Moira

[Hidden]

Hi Moira,

I'm not sure either way. All I know that the tendonitis seems to be effecting the parts of my body that have suffered from this in the past. Before I developed PMR. My elbows and my left knee have been quite painful today. It could be the PMR flaring, but I do not have any pain in my muscles. Or could it be withdrawals from pred which can cause pain in the joints. I will just go with it and try to eat more anti inflammitory foods etc. Tomorrow I will be a really good girl and take breakfast and the pred in bed and then, go to sleep again for a couple of hours before I get up and start work.

Pats.

[MoiraCT in reply to Hidden]

Hi Pats

That sounds like a plan. Hope you're feeling better by now.

Moira

[Hidden]

Hi Moira,

Yes thanks, slightly anyway. I upped the pred yesterday as it was really painful to grip anything. I also took ibuprofen last night. This morning, the pain was back as soon as I got up so 8mg of pred again and ibuprofen. I even rang my GP via his secretary. He was good enough to ring me back with advice----------------------grrrrrrrrrrrr!!!!!!!!! I'll just stick to the web site in future. Feel a bit better now. At least it doesn't hurt to breathe.

By the way, I did eat breakfast in bed the other day and I took my pred. Then I went back to sleep. I had the most horrendous dreams. Fun isn't it?

Pats

Turmeric is a great anti imflammitory as we all know. Ever tried it on crisps? I have. It tastes like powdered Dettol.

[MoiraCT in reply to Hidden]

Powdered Dettol! Turmeric (circumin) is a part of my mixture from the herbalist and it's completely foul. Liquid silage. Still, you get used to anything.

I had really disturbing dreams the week I had on pred to confirm the diagnosis. That's part of what put me off.

Moira

[Hidden]

Hi Moira'

I'm not suprised. I've had them and still have them now and again, but I'm a big fan of horror movies so I guess I've got a strong stomach. As for the taste of a lot of the herbs etc which are great anti inflammitories, the way I get round it is to make, once a week, what i call my "majic stew". It's base is very lean beef, onions, carrots and celery. To it I add every beneficial herb and spice I have in my kitchen such as basil, rosemary, thyme, turmeric, nutmeg, garlic, curry, black pepper and more. I put in at least two fresh greens such as broccoli and chopped cabbage. I do use a couple of stock cubes as well, so some salt, but not much as I use a four pint pan. Then I reduce it all over a period of about two hours. Result, delicious. It gives us two meals with either rice or pasta.

The weather here is fresher today. I like it that way. Yesterday was so oppressively hot I could hardly function.

Pats