esr

[steph1]

my ESR levels have gone right down at the mo im still in pain and stiffness im on 12mg of steriods, does this mean i dont have pmr im confused? does anyone know

Steph

[Polywotsit PMRGCAuk team member]

No Steph, it doesn't mean that you don't have PMR at all. It means that the steroids are doing their work by reducing the amount of inflammation in your bloodstream. However, you may still have some pain and stiffness. There are some people who have PMR who never have particularly high ESR or CRP blood levels, but who experience severe pain and stiffness. I was one of these. I was classed as 'atypical'. But the doctors are now becoming more and more aware that the ESR levels are only one indication of the levels of inflammation. Are you taking a painkiller such as paracetemol to help you with your discomfort?

[steph1 in reply to Polywotsit]

Hi katie

im on tramadol for the pain and that helps, i had tempole biopsy in aug they done at the side of my ear and since then i have lost most of my hearing in my left ear and have a large lump on the same side by the temple which gives me pain. The hump at the top of my back is still the same i thought it might have reduced in size with reducing steriods?

Steph

[GreyOwl in reply to steph1]

Tramadol is not a drug which should be used over long-term periods if it can be helped. Extended use of this drug can cause depression, delusions, hallucinations and other mental disturbances. I've seen these effects with a close relative.I would urge you to discuss this aspect with your GP.

[pennyw Administrator PMRGCAuk team member]

Hi Steph

Sorry to hear that you are still in pain. Like Kate said not everyone has high ESR. Mine was not especially high but I was very stiff and in pain by the time I was diagnosed 14 months ago.

You are the first person who has mentioned a lump. Before PMR started I had tendonitis and a lump appeared on my inner ankle. It wasn't cured by steroids although the PMR pain has improved hugely.

I gave up on the physio advice which was always out of date one day after I had seen them as the tendonitis pain moves each day round my left foot. About three months ago I started having acupuncture. The tendonitis is still with me but much, much better. I can walk quite a way now although if I overdo it I have to rest it the next day.

But the lump is still there and very noticeable. I have reduced from my original 20mg to 7mg for five days and 6mg for 2 days. (Been at this for a few weeks as aching started to return so now taking a couple of Ibuprofen at night which keep things bearable until morning and the next dose of pred).

All my GPs - we have to see anyone available in our surgery - and the rheumatologist have never been very interested in the lump. I have begun to think of it as an indicator that i am not in A1 condition.

Would be interested to hear if your doctors have any thoughts on the reasons you have a lump and, of course, if it does reduce with your steroid reduction.

All the best

Penny

[sjwil in reply to pennyw]

I have PMR and my mum also does, but she also suffers from the GCA which she often has to go on high dose pred for. But my mum has has this lump on the back of her neck which started some years ago. She has had it operated on several times to remove it and it always comes back. But they do say it is a fatty tissue build up which is a common place for fat to build up behind the neck, below the nape. Mum thinks because she has pmr and the steroids cause her to gain weight and not lose it again this is why this lump developes. It is unsightly but not a health threat, she only had it removed because she was consious of it but then the scars she had from it now become sore all the time. Steroids do cause thinning of the skin and the skin doesnt repair itself as it would normally.

Mum has been told over again that the lump will keep reccuring while she has excess weight to carry. Its so hard to keep the weight down and deal with feeling ill too.

[ritter in reply to sjwil]

Hi sjwil,I am in my late 60,s very late and is hard to keep thin on 20mg,s steroids but it is possible to do.tell your mum to keep to a very good diet lots of calcium based foods spinach every day along with all the veg she can eat and fish,if you can check out all the vits and minerals for her,and then check witch foods contain what she needs she will feel lots better with a good diet no cheating.good luck ritter,

[Hidden in reply to pennyw]

Hi Penny

I have been on daily Pred 20mg since July'12.During a Pred reducing session from

20 to 15mg ,at 1mg a day for week, I had got to 16mg and with some warning,pains

in shins,woke to find both feet were locked to shins at 90degrees and heavily swollen

very numb but tendonitis pains up shins and across tops of feet.Advice from pmrgauk ,that I was reducing to quickly(orig advice was from Med Source I went back to 18mg and eventually to 20-where I started.With Paracetemol and swimming

some walking everything is returning to 'normal'.In the early state I stepped of a high curb and felt the pain of all pains in the top of the rht foot complete with 'Bump' on top of, above instep, the foot seemed to flop down when walking.Carried on with the swimming,massaging every morning tops of feet /toes and ankles with 'Deep heat rub' Noticed today that bump has gone? and foot does not flop downs so much.Reckon that I have had a Tendonitis flare in both feet-not had before caused by the too rapid reduction in the Pred. This in a time span of 30 days.Now back to orginal Pred dose,will have to think about a plan for reducing again but more slowly

this time Hope this info is of help to you John

noticed today that the bump has gone? and the foot does not seem to flop so much.Not had before but reckon that I have had a Tendonitus reaction to the too rapid reduction in Pred

[steph1]

my doctors have said the lump at top of my back could be cushing des

steph

[Hidden in reply to steph1]

Hi Steph,

So sorry that you are still having these upsetting side effects. When I was on the higher doses, I had a lump come up on my right collar bone, near the centre of my neck. It did not hurt except when I prodded it fo a while and then it was sore. It went away all on it's own when I got below 10mg of pred. I'm sure the majority of such lumps are caused by steroids - your doctors are not worried, so try to stop worrying about it.

The lump of fat at the back of your neck is the same thing - we all get one to a degree, and none of us like it, but mine has certainly got smaller in size since I reduced below 10mg of pred.

I have never had raised markers in my blood tests even though I am a classic case for PMR and that has been said by 2 specialists, so try not to worry about any link between blood tests and your illness.

If you've still got pain and stiffness every day then I wonder if you should try a higher dose of pred. Last year, I struggled on 8mg for ages and was in pain every day. Finally, I went up to 10mg and the pain went away. I stayed on that dose for 5 weeks and then reduced every 3 weeks by half a mg. It worked. I am now on 8.5mg and feeling pretty good.

Pats.

[floramay]

i am having trouble with my left foot can not put foot flat down for pain i also get burning in leg and foot eny one else having same problem .

[allotment-lover]

I have a small lump where they did my biopsy on my temple and it hurts if I press it and there is some minor pain in the area around. The biopsy was done last September. I did mention it to my consultant and she did not pursue it so I assumed it was fairly common after a biopsy. It did not come on rught away but after a couple of months perhaps. Have other people had this?

[Dianaselvademar]

Hello Floramay

I also have burning pain in leg and pain in my left heel which has only really started since reducing steroids (have just been told by my Dr. to go back up to 8.5mg for three weeks) fatigue also seems to be worse when tapering steroids. Have been told steroid withdrawal symptoms appear generally within 4 - 5 days after a decrease and then settle, hopefully. I also experience more stabbing in feet and fingers, and throughout muscles generally. Hope this helps.

[pennyw Administrator PMRGCAuk team member]

Hi everyone who has answered Steph's original question about the lump.

I am now down to single figures in my pred dose; the lump looks the same to me as it has since the beginning. It doesn't hurt and although it looks like a small pyramid shape no-one else would notice that on my foot! Hopefully, as I reduce further it will disappear.

I have definitely found that while I have been reducing especially for the first few days of a decrease albeit very small that I am much more tired. Trouble is if I go to bed early I wake up aching sooner! If I stay up late then I still sleep for about 4 hours - sometimes less - before waking up with an ache. I find the ibuprofen just before i go to bed (2 x 200mg) keeps me going without aches for longer.

I really don't mind how long it takes me to get off the pred so I am happy to stick where I am for as long as it takes to feel less tired and less achy. The thought of going back to square one is quite depressing!! I am proceeding with extreme caution

I think I must try some deep heat massage on my feet at night as scubadiver suggests as I now always wear bedsocks when I go to bed as my feet hurt less when they are warm. I usually have to take the bedsocks off in the middle of the night because the feet then get too hot LOL - what fun!

Perhaps we should be putting all our tips, experiences, etc in a leaflet for new sufferers?

[ritter]

That is a good idea pennyw, in fact I think we all should get together and write a book for all the new sufferers to read.I was so alone before I new about this site,I feel so confident now its unbelievable.confidence in numbers. I had lumps and bumps on my hands neck back not all together on different occasions but still quite nerve racking docs did not tell me what to expect,still do not sleep well at nights does not take much to wake me up and once awake that's it for the rest of the night.keep in touch.ritter

[Annodomini]

Although my GPs were quick to diagnose and treat my PMR, they have a conventional view of the symptoms which they seem to believe are confined to the large muscle groups of the shoulders and pelvic girdle. However, in the weeks before my diagnosis, my right ankle was painful and swollen and my lower back was painful when I walked - it still is, 18 months later. As I have reduced the prednisolone, my Achilles tendons have become increasingly painful, especially in the mornings when I find it hard to walk to the bathroom. They ease during the day. I also have a recurring swelling on my left instep. As many of us seem to share these symptoms, they would seem to be associated with the PMR and I wish more GPs were aware of this.