get quite painful pressure headaches at front/side of head a lot am told not related to illness but preds and to ignore them what do U think

[littlewren]

I was diagnosed GCA Jan 2013 started with 60mg now down to 5. Taken down too quickly at start. Have never been completey headache free. Get a lot of pressure head top front of head at the sides and sometimes near temples. uncomfortable strange feeling creeping feeling too. Have been told that it is the steroids causing these and not GCA but do not understand why they dont' go as I go down . Have sometimes got rid of them on higher doses but am told to continue going down. All very strange. My blood tests have with one exception near the beginning 'within normal range'. Anyone else had this problem. Would appreciate your help. Thankyou

[tomasina]

Hi Littlewren,

I also get these pressure pains in my head virtually there all the time, worse first thing in the morning, and I find it more comfortable to sleep sitting up. My scalp is also tender. I was diagnosed three and a half years ago and have had one flare, now down to 4mgs. Prednisolone daily, and 10mgs. Methotrexate weekly. Although I have a very good Rheumatologist he does find my pressure pain in the head a bit of a mystery. Has suggested it may be problems with my neck, but it is exactly the same as I had at diagnosis and my GP gave me acupuncture for my neck with no effect.

I fully understand how you feel, but, perhaps, it is something we will have to live with.

All good wishes

Tomasina

[littlewren in reply to tomasina]

Thankyou Tomasina for your prompt reply. Three and a half years seems a long time but as I have not really spoken to anyone about it only looked on this site I realise that GCA can last longer than I thought. It is very interesting that you have these strange heads too and very reassuring. I don't know anything about Methotrexate and would like to speak to you again but I am going away in the morning till the mid of next week and will get in touch again then.

King regards

Little wren

[PMRpro Ambassador in reply to littlewren]

Some doctors use methotrexate as a "steroid sparer" meaning that you get the same effect from a lower dose of pred as the MTX changes the way your body metabolises the pred. It was advocated for some time but the more recent guidelines have reverted to "there is no evidence" - only a few smallish studies have been done, one showed it helped, one showed it didn't and another didn't know! It may help in the short term but it seems it doesn't change the overall total dose of pred needed in the longterm, especially in GCA. It does seem to allow some people to get to a lower dose of pred but it may be that these are people who don't actually have PMR but late onset RA which can be almost identical in presentation. It is a case of "suck it and see" - it has some unpleasant side-effects for some people. If it makes you feel ill half the time then a mg or so less of pred isn't worth it in my opinion. Reducing in very small steps seems to achieve a similar results - often the difficulty in reducing is steroid withdrawal pain and it has been found that that can very often be avoided by 1mg reductions spread over a few weeks.

[ritter]

Hi littlewren,I too diagnosed Jan2012,started off on 60mgs,rheumy brought me down to quick and back up again in 2013,but not with any flair but with raised markers,then Doc forgot about me in 2013 and I was still on 30mgs the pain was out of this world untill I stated to deduce on the instructions of another rheumy,but even he was quite prepared to bring me down for to fast,but thank goodness for this forum other wise I would still be playing silly beggars with the steroids,now down to 8mgs and doing OK,but still get headaches but only very slight and not all of the time wot I do still get is breathless may be 2or3 times a week but I can cope I also get little aches and pains in hands arms feet and back,oh also deafness in one or both ears but it goes away and comes back I think its all down to the illness and preds,Hope you are feeling good soon,Kind Regards Anne,

[redchuggz]

Hi Little wren,

I was diagnosed with GCA and PMR in Dec 2012.

I have had the same problem with headaches, which feel like I am wearing a steel hat which is several sizes too small,

along with this my tongue swells and rubs on my back teeth and I suffer from severe cramps. My Prednesdilone is at 7.5mg and I have been stuck there for the last 5 months. All my bloods are coming back as normal. My rheumatologist has said I need to stay on this dose until everything settles down and try to avoid stress.

This disease is very frustrating and for me has been life changing.

I have found going for morning walks has helped, or if later in the day an afternoon sleep.

All the best

redchuggz

[littlewren in reply to redchuggz]

Thankyou to everyone for your replies. I love the steel hat description its very apt ! I am so glad that I have at last asked these questions of you all as its relieves the worry that I am not experiencing something unique to myself. It is as you say a very strange illness. Difficult to explain to people when most of the time you can carry on as normal doing most things just gritting your teeth and getting on with it. I found it very confusing when seeing my consultant registrar on my last visit that her opinion was to come down from 10 by 1mg in 8 week blocks when the consultant had said 4 weeks. Anyway it seems a matter of 'do it yourself' which is working. Hope you are all feeling and I do agree that there is nothing better than a good walk in the fresh air what ever the weather.

Kind regards Little Wren

[PMRpro Ambassador]

You must also bear in mind that headaches can also be a side-effect of pred.

And whilst it is no consolation, GCA and PMR are chronic conditions that ARE life-changing for almost everyone. Learning to live with the changes and accepting you are on a different road now - a diversion if you like - does help. Trying to fight it all wastes valuable energy - going with the flow allows a far better quality of life, certainly now and possibly for some time to come. Several people have found that this attitude has resulted in them being able to reduce their pred and even get off pred altogether. It isn't giving in, I don't know what words to use best to express what I mean because some people get very upset thinking I am advocating "giving up". Understanding that rest helps your body recover better is also crucial - having a fixed nap or rest time in the afternoon (or when suits you) means you can carry on effectively longer through the evening. If you are overtired you don't function well and it carries over to the next day.

Early last year, one lady decided to turn into a "Precious Princess" and gave up housework and gardening - all the things she found were followed by pain and a flare whether they were things she liked doing or not. At the time she could hardly walk to the shops - now she is on a far lower dose of pred (she'd struggled at 9mg and is now on under 4mg) and can walk for miles. She puts it down to the real rest she allowed herself - initially as an indulgence but it has achieved what she really wanted: she is well on the way to Club Zero.

[jinasc]

I had GCA.

I was given this tip which helped with the headaches.

Every hair on your body is attached to a tiny muscle. So, when your scalp feels tight or you have a headache spread your fingers through your hair and gently pull. Do this all over you head. The gentle pull releases the tension in the tiny hair muscles.

You can also find relief by:

1: placing two fingers gently on your temples - about level with the corner of your eyes and moving in clockwork circles.

2; Placing your thumb and fore finger on the bridge of your nose, move gently clockwise.

Do them one after the other, starting with the hair.

pmr-gca-northeast.org.uk/st...

[EdithWales]

I have recently been diagnosed with GLA after a positive biopsy 12 days after taking the steroids. I saw my rheumatogist on on Thursday who is superb and my CRP is down from 180 to 4 and ESR from 127 to 8 in view of these very high markers she is keeping me on 40 mgs for 2-3 months and the reduce to 20 in the first year. The only symptom I have is exactly what you describe with pressure at the sides of the head, not pain just awareness and it comes and goes. She didn't seem to think it was significant and as I said she is at the top of her game. When I see her next in a month I will ask her again. In the meantime, I will try what Sambucca suggested and have lots of rest, can't do anything but good.

Best wishes

[Celtic PMRGCAuk volunteer in reply to EdithWales]

It's good to hear that the steroids are doing their job in controlling the inflammation and have already successfully reduced your CRP and ESR to within the normal range. Pressure at the sides of the head is not unusual in these early days - I experienced fleeting pains for a very long time, and steroids can play a part in this. Remember that the steroids are not curing GCA but are just damping down the inflammation that causes the pain until GCA decides to go into remission. I think 40mgs for 2-3 months followed by reducing to just "20 in the first year" sounds an unnecessarily lengthy time to be on such a high dose. But you have mentioned that your Dr "is at the top of her game", so hopefully she will monitor you well throughout. I may have been exceptionally lucky but under the guidance of my wonderful rheumy I was successfully reduced from 40 to 15mg in one month before slowing the reductions. Like you I had very high inflammatory markers at diagnosis, but my rheumy repeated the tests weekly from the start and always before any planned reduction. Hope all continues smoothly.

[EdithWales in reply to Celtic]

Thank you Celtic. There was messing around at first GP husband didn't help and I thought she said to take 40 mgs and was assured by the above it was 30 so only took that dose for 4 days until I saw the rheumatologist when I started on the the 40 already the CRP was down from 180 to 35 and ESR 121 -107 She was pleased to have her diagnosis confirmed by the positive biopsy as she had been trying to persuade the ophthalmologist to do a routine temporal artery biopsy but they won't do it unless there are visual symptoms and I never had them. They have to be referred to general surgeons. I don't know if this is local policy or common practice. I seem to have everything that's going, DXA to measure bone density, chest X-ray although I had a normal one in September, monthly bloods and see her regularly.

I have a friend who is a consultant in Manchester and she said I need to be screened for TB as well . I did ask about that and she said it wasn't necessary. I am surrounded by doctors but am very happy with my new friends in the forum, you really understand.

I am most grateful for your advice.

Best wishes

[tomasina in reply to EdithWales]

Hi EdithWales, Could you please ask your Rheumatologist the physiology of the head pains, which are not a headache, more pressure. I find it difficult to understand when the inflammatory markers are normal. If you find out, please post here and I will be very interested having experienced this pressure for over three years. I would find it impossible to lie down to sleep. If I slide down the bed, the head pain is awful.

Good wishes - Tomasina x

[EdithWales in reply to tomasina]

Of course I am have an appointment in 4 weeks if my blood is ok she said to wait another 4 weeks but as soon as I know I will post you. I too don't understand it and it worries me, if the blood levels are normal why the symptoms. It is always worse when I get tired I sleep sitting up as I have reflux and since I have been on the steroids the coughing has been dreadful, she suggested I increase the drug to stop it and sleeping on three pillows has pretty near cured it

Best wishes

[PMRpro Ambassador in reply to EdithWales]

The blood levels are only an indication and are produced by the inflammation - the actual active inflammation leading to the blood results can disappear quite quickly under high dose pred but the damage it has caused takes much longer to repair. Think about a bruise - it can fade within days, the discomfort can last far longer.

Further to Celtic's comment about keeping you at a high dose for so long - it sounds as if the rheumy is working on the basis of the most recent research that shows that the inflammation can still be present and active after 6 months on high dose steroids (defined as over 20mg/day) even though there are no signs in the usual blood tests or in terms of symptoms. That suggests keeping the pred higher for longer will have a good effect in avoiding relapses - which it is known are common in GCA in the first 18 months and almost all relapses are due to reducing the pred too far or too fast. And in the end - if you reduce too far too soon and have to go back to a high dose you have cancelled out the aim in reducing at the speed you did and in the end you will have taken more not less pred. Although the acute side-effects of high dose pred are unpleasant to put it mildly, it is the longer term effect of the total dose of pred that is most concerning.

The good news though is that that research I mentioned does suggest that there is a far better blood test which may be useful in monitoring the progression of the GCA in the future - some cells can be identified in the blood that shouldn't be there but can still be found when all else appears hunky-dory. This test isn't widely available but it does already exist and isn't horrendously expensive so this isn't wild flights of fantasy.

You sound to have a very good rheumy there Edith - which hospital Trust are you under? But I'm intrigued by the concept of being tested for TB - did your friend maybe mishear "TAB" (temporal artery biopsy)?

[Trenny in reply to PMRpro]

Do you know the name o the blood test?

[PMRpro Ambassador in reply to Trenny]

It is still at the research stage at present so isn't available generally as yet.

[EdithWales in reply to tomasina]

Hi Tomasina

Have you seen the reply from Celtic? I found that really helpful best wishes