Tender scalp and PMR and GCA

Bones, joints and muscles
1

Have had PMR for 2 years and am down to 3mgs since Jan. 1st.

T

oday my scalp on part of one side is very tender when I touch it plus rather stiff neck on same side.

I thought my vision was a bit fuzzy over the last 2 or 3 days and put it down to too much computer and telelvision. 

The pred reduction to 3mgs has not been great and I have suplimented with paracetamol when pain was bad, usually a couple of hours before pred. dose which I take at 8pm ish with supper.

This has made life managable.

Please can anyone help and tell me it can't possibly be GCA.  I don't have a headache?

DJ

2

My scalp is tender too - and my vision symptoms exactly the same as yours!   I also have a headache over the top of my eyes, and I put it all down to too much computer/television/reading/tiredness etc. - but am now beginning to wonder......?

3

Could you up the Pred and see if you feel better?

4

Without another explaination for the scalp tenderness, I would be very suspicious of that developing in someone with PMR especially with any vision problems.  I have only been part of this for a few weeks, but I think it would be irrresponsible for anyone to assure you it can't be GCA.  Call your doctor!!! Pronto! IMHO.

5

If the reduction "hasn't been great" then go back to where you were - and see if it improves at all. But if it doesn't do so very quickly, please go to a doctor and mention everything you are experiencing. 

"Too much computer and TV" really shouldn't affect your vision - if it does you need a visit to the optician for the right glasses! But scalp tenderness always sends shivers up my spine!

I had scalp tenderness in the early days of PMR but it went away after a few weeks. At that time I didn't know what I know now and having discussed it with a rheumy or two the general opinion is it probably was inflammation of arteries but it didn't progress - I had other symptoms  such as claudication in thighs and biceps that were suggestive of GCA (or some other large vessel arteritis). Don't leave it long!

6

DJ, I feel very strongly that anyone suffering from PMR who suddenly experiences any problems with their vision or any of the known GCA symptoms should get themselves checked out immediately.

Those of us with PMR who know what to look for as far as GCA is concerned are far 'luckier' than those who do not have PMR but suddenly experience symptoms of GCA.  Because they are not aware of GCA, they are also not aware of the possible consequences of ignoring  the symptoms.  Of course, such symptoms can also be due to many other serious conditions - our son awoke one morning sensing a change in his eyesight which was due to a stroke in his sleep;  a member of our PMR support group experienced some GCA-type symptoms which turned out to be caused by a TIA.

So do check out any unusual visual problems.

 

7

I have had, still have, a very painful stiff neck and scalp tenderness. Mentioned it to my excellent rheumy this morning, I trust his judgement. His verdict, 'Due to PMR not GCA'. He based this diagnosis on the fact that I am on a reduction prog for pred and  have recently had a severe trauma. His advice, increase pred. and stay on the increase for a while. Check after 4-6 weeks.

Hope your pain abates soon.

Blessings

8

I'm feeling a bit nervous about GCA at the moment.  However, I may be over-thinking and anyalyzing the situaton.  I was diagnosed with PMR in March 2014; started on 40 mg; reduced too far and too fast (on Dr advice) and had a meltdown at 25 mg in late May; back for 40 mg for a month; now at 16 mg after following one of the sage slow reduction schemes recommeded on the forums.  In the last 24 hours I have had stabbing head pain of very brief duration in various areas of my head, including both temples.  Perhaps 10 or so occurences, ncluding the middle of the night.  I do not have a sensitive scalp although I did have this prior to PMR being diagnosed.  I also do not have any visual or jaw symptoms.   The only other 'new' symptom I've had in the past few days is a significant stiffness across my neck and shoulders.  Four days ago it was difficult to hold my head up straight, but things have improved in the last 2 days.  I put this down to withdrawal symptoms as it's early into the slow drop to schedule to 16 mg..  Am I being paranoid? 

9

I should also mention that I have significant blateral leg issues (cement legs) which I had prior to PMR diagnosis.  They disappeared on the first dose of 40 mg, but returned and have stayed with me since the meltdown.  Dr's feel that the leg problems I had for the prior 10 years were/are PMR related.  The other day Eileen mentioned that GCA may also affect the larger muscle groups.  This has also made me wonder if GCA is lurking around.

10

Jean, I'm sorry that you have been struggling for so long to reduce from the high doses but I'm surprised you were prescribed as high as 40mg for a diagnosis of 'just' PMR.  Such high doses are reserved for those diagnosed with the linked condition, GCA.  However, as you mention that you had a "sensitive scap" prior to the PMR diagnosis, then it does sound as though perhaps your GP suspected GCA at the time.

As you mention you have recently reduced your steroid dose, albeit slowly, then you may be right in thinking that the new stiffness you describe in your neck/shoulder area could be due to steroid withdrawal, especially as you say this has improved in the last couple of days.

I'm wondering whether the "stabbing head pain" could be neuralgia as that is exactly how I would describe pains that I have experienced in the past whilst on steroids for PMR/GCA. Have you been out in any cold winds?  During my GCA days, the slightest puff of wind on my head/face would set off these neuralgia-type stabbing pains through my head, face and eyes.  In fact, even some drilling of a tooth set off severe nerve pain lasting about a month at one stage which had never happened before so I put it down to the inflammation of GCA resulting in a susceptibility to such pain.

Yes, as Eileen has already said, GCA can and does affect the larger muscle groups anywhere in the body, and 'cement legs' is a term many of us have used in the past.  Walking through treacle is how I often described my legs!

It really does sound as though since the very early days of being advised to reduce too far and too fast has got your body into a yo-yo situation with the steroids, making it difficult for you to reduce.  Having said that you are still in the early days with PMR (and possibly GCA), and flares in the disease can unfortunately be very common in the first 12-18 months.

I don't think you are being paranoid at all and I can understand you feeling nervous.  However, do try not to panic as the stress won't help.  You say you haven't experienced any visual problems, so just remain alert - any hint of anything untoward with your vision then straight to A&E.  Meanwhile, a heated pad on your neck/shoulder area will help with the stiffness there - I spent many hours with a large electric heated pad on those areas (from Argos) and found it very comforting.  Also keep your head well covered when out in the cold.  Also, if you haven't had one, do ask for a Vit D blood test. Severe deficiency can lead to body pain, and a high dose course of pure Vit D3 (Colecalciferol) will be neede - the usual Calcium + Vit D prescribed alongside the steroids will not be sufficient to improve any severe deficiency. 

11

JandaPea, we can't add anything that would be any more helpful than the advice given by one of the best rheumys in the country!  I do hope your stiffness and pain will ease quickly following your treatment today.  Kind thoughts and blessings to you too.

12

Thanks so much for your helpful and encouraging response MrsO.  I should tell you that I was originally started at 20 mg and had some relief, but not 70%.  The dose was increased to 25 mg and 3 days later I had a complete meltdown.  That's when the dose was increased to 40mg on the advice of the treating Specialist Internist (Rheumy's don't deal with PMR in Canada).  I had immediate and total relief in less than 12 hours!  Of course I had no knowledge of PMR at the time so never questioned why the jump from 25 to 40 mg.   

Actually, I have been quite successful with the reduction since having the second meltdown last May.  Fingers crossed that it continues.  I've certainly learned to listen to my body.  For instance, I've been dropping at 10% every 3-4 weeks but encountered some difficulty dropping from 16.5 to 15.  Not wanting to have a flare, I decided to drop to 16 for a bit before trying 15 again.  I may have to back up again and stay at .5 mg reductions, but that will be OK.  As much as I would like to get rid of the moon face, fatty neck and middle, sensitive teeth, and so on with side effects, I will do what I can to avoid a flare.

I have another question for you.  With my history, once I reach 15 mg should I stay there for the recommeded 6 weeks?  On the reduction schedule it takes about 3 weeks to reduce to the new dose on a full weekly basis. If I did stay at 15 mg for 6 weeks, do I count those 3 weeks, or should it be 6 full weeks at 15 mg?

As to Vitamin D.  I've had the test and all is good.  I 've been taking viatmain D and calcium for years and have doubled up on those since starting on prednisone; taking 3,000 units of D and and a minimum of 1200 mg of calcium daily.  Have had both a bone density scan and a full body bone scan (using dye and X-ray).  No need for additional bone saving meds for now.

I have a lovely heating pad specifically designed for neck and shoulders and spent much of last weekend wrapped in it. 

I live in northern Canada and although I wasn't out in the -15 temperature yesterday, I'll remember what you say about the possibility of a cold wind causing head pain. 

 

13

Cold and PMR really don't mix, and wind and windchill just make it worse! Changes in the weather can also have an effect - something to do with pressure changes probably but here in central Europe we get a bio-weather forecast too!!

No, the staying at 15mg for 6 weeks is to get the inflammation under control before reducing - that should be all done by now and it is a case of reducing very slowly. You are already spreading that dose reduction - maybe try in 1/2mg steps over the 3 weeks? And wait for spring - and a bit of warmth!

14

Thanks Eileen.  Might be my prednisone brain acting up; however, I'm not quite sure what you're sayng to me in the second paragraph.  :-)  I'm at 16 mg now. Once I taper to 6 days at 15 mg over three weeks are you saying to stay at 15 for a full 6 weeks more and then reduce by 1/2 mg.  Sorry if I'm seeming a bit dense.

15

No - I'm saying I think all the inflammation should be under control by now after the time at the higher doses. It is just a case of reducing very slowly and carefully as you have been doing to find your "lowest dose" - I don't see any reason to stay at any given dose now unless you start to feel symptoms of either a PMR flare or steroid reduction. 

16

OK! Thanks Eileen.

Actually, I'm not entirely sure the inflammation is under control.  I say that because I have felt upper arm pain develop an hour or two before it's time to take the meds.  Mind you I don't think I've felt that recently.

I'll definitely give your suggestion a try though.

17

Thanks everyone for your replies.

I have  gone back up to 4mgs tonight and will get eyes checked.

I am praying this will help.

It seems so hard to decrease on this small dose and hard to believe it can make a difference to the pain and mobility.

This is such an infuriating condition!

DJ

 

18

Jean, being in temperatures of -15 and having PMR doesn't bear thinking about!  Now I feel guilty for complaining about waking up to 0 degress this morning!  

Eileen has already given you her usual good advice for reducing, and at the dose you are on it shouldn't be necessary to remain as long as 6 weeks with the slow tapering that you are doing.  

It wasn't until I was down at the very low doses (5mg) that I encountered real problems and then found that reducing in just half mg steps, tapering over 7 weeks was less problematic.  On returning to 5mg following a flare necessitating an increase back to 10mg, I remained at 5 for 6-7 months on the advice of my rheumy and then started reducing in half mg steps, taking 4.5mg on one day of the first week, two of the second, three of the third etc.  Even at the higher doses that you are on, as your body is seemingly so sensitive to the reductions, you may need to do your tapering over a similar slighty longer period to trick your body into not noticing the steroid withdrawal.

I hope your head and neck pain continues to improve.....also your temperatures! 

19

I think you're right MrsO, I may have to do my tapering over a longer period from this point on.

Sure wish there was a point in time that one could stop worrying about GCA.  Living in a small community in Northern Canada there is not much chance of getting assistance from the local health centre.  My practitiioner has advised me to pop 70 mgs if I really feel a serious threat of GCA.  I also travel a great deal (for pleasure) and would have to do the same if in another part of Canada or out of the country.  I would then be relying on Eileen, you and others on the forums to guide me forward. 

 

I'll be travelling away from the -15 in another week when I head to British Columbia in Western Canada for a short while.  It will be around +8 C or so there, but probably fairly rainy.  From there I'm off to Central America for 3 weeks with daily temperatures ranging between +28 to +34 C and lots of humidity!  I was fine in Central America a few months ago when I was still at 22.5 mgs so all should be well this time around.  Don't worry, I won't reduce while travelling.

By the way, it's usually -35 to -45 C here at this time of the year.  We're having an extremely mild January.  I'm hoping it continues until I leave.

20

The reduction is a big percentage at these low doses which is part of the problem. That's why we suggest spreading any reduction over a few weeks which allows the body to get used it slowly - because it is having to do more in producing its own cortisol as well. Even when you are off pred altogether it is thought it takes up to a year, sometimes longer, for that to get back to normal even though there are no changes for it to adjust to. 

But nothing can alter the fact that it is possible the underlying cause of the PMR is still present and active. If that is active it doesn't matter how slowly you reduce - you will find a place where you can't reduce further without the symptoms coming back. It is the nature of the beast.

And honestly - 4mg is a low dose. That's where I am, I am perfectly happy with it and not desperate to try another reduction after the last didn't seem to work. In fact, I've taken 5mg for the last few nights, I have a sore hip (bursitis), had a cortisone shot last week which helped but there were still niggles which are much better on 5mg.