GCA temple artritis ?

[bobless]

Hi all i was treated for temple artritis with 6o mg preds started 7 weeks ago since then my doc made urgent app with rheumy my bloods was 33 inflamation i had very bad pains in temple area and a constant head ache after taking preds my head pains were reduced by half but i do still get spasm on a daily basis some days worse than others and my head ache is always there on left side temple area but since being on preds its a numb dull ache but constant also on some occasions i can press left side of nose maxiliary i think they call it and that sends pain to temple i do not have jaw pain but temple pain thats like a grabbing nerve pain that lasts for a up to a minute but usualy a few seconds but in rapid spasms . The rheumy would not see me for urgent app sent letter stating he was busy and did not think it was GCA T/A and said try vascular clinic but they also have a waiting list so i paid to see a rheumy privat got a app the next week and he got me refered to his NHS hospital for urgent tests well i went last week for duplex ultra sound but it was clear i am now waiting for MRI scan and then a skull scan he does not think its GCA T/A and he said its pointles sending me for biopsy as i have been on preds so long and it would be 10 weeks preds by the time i had a app for one and the chap that did my ultra sound scan said before he did scan that it was unlikely to be positive scan due to being on preds . MY problem is i have most of the symptoms but where most get vast relief with preds i have only had some relief i still get the spasms although reduced and the headache is constant although reduced since taking preds and now i each time i reduce the spasms are raised and the head pressure usualy kick in 3 days later and gets really bad the affects of preds not sleeping very confused masssive mood swings aches n pains in shoulder neck arms and legs all left side mostly plus there are days when my head feels like a pressure chamber im wondering what is wrong with me what am i fighting if not GCA T/a my gp made a app with neuro its for 22nd september thats a long time it was made the day i went on preds 7 week ago i know i have to reduce preds slowly now on 35 mg since yesterday but each time i reduce i get loads more temple spasm pain and head pressure and body pains all left side this is a hard road im on like all of you but its made harder by the fact i might have something different but still have to take the preds im reducing by 5mg a fortnight till i get to 25 mg the by 2.5 mg a fortnight im stressed not knowing what is wrong the rheumy has not totaly ruled out GCA but thinks it is highly unlikely has anyone else been in same situation I would like to thank you all for your replies to my earlier messages this is a great site and very helpful and you are all great people thankyou

[Celtic PMRGCAuk volunteer]

Bob, it must be so frustrating when two different rheumies say that they don't think you have GCA whilst at the same time fail to come up with other possible causes for your continuing symptoms.

A PET-CT scan would probably give the very best images leading to some answers as to whether you do have GCA or some other condition under the vasculitis umbrella but it is only available at a few centres across the UK.

You say that your head pains were reduced by half on starting steroids. Is that pain worsening with each reduction? If so, either you may have reduced too soon from the starting dose or that starting dose may not have been sufficient to get complete control over the inflammation in the first place.

If the symptoms are getting worse with each reduction and then gradually improving, then perhaps you just need to remain longer on each new dose and/or reduce by a smaller amount.

Meanwhile, perhaps your GP can put pressure on the neurologist to bring the appointment forward. Stay positive, Bob.

[bobless in reply to Celtic]

Hi Celtic it is very frustrating not knowing what i am fighting i thought this ultra sound i had was supposed to be one of those new machines uts a duplex but because my esa is now normal and being on preds its not giving a result the rheumy also explained that i was not responding to treatment as i should most people with GCA temple artritis have little temple pain after treatment with pred only flare mine though being improved has always been ongoing Rheumy also explained there are several other things that mimic T/A all these disceases are rare like Gca but are treated differently with different meds but sometimes with smaller dose preds but the rheumy said he thinks its more neuro but is keeping a open mind he said he needs to rule out intracranial lesion are tumour hence MRI scan I realise that all my symptoms are like Temporal artritis and being started on 60 mg pred was correct however im not responding to them as i should and evidence so far is negative to that thats all well and good but its not helping me going forwards with still getting pains on daily basis and the added affects of preds the rheumy has wrote letter to my gp to try to expedite app with neuro

[Celtic PMRGCAuk volunteer in reply to bobless]

Frustrating as it all is, Bob, at least the rheumy has arranged an assortment of tests to rule out other possible causes, and sometimes that is the best that can be done in the initial stages of trying to find an answer when GCA fails to respond to the usual treatment. Good to hear that he's trying to bring forward the appointment with the neuro as well. I really do sympathise with you, Bob, and understand what you are going through especially as I spent a year undiagnosed with PMR, with 4 months stuck in bed in agony until PMR decided to go into remission.....only for GCA to then get in 'through the back door' and one month later both PMR and GCA were diagnosed. So hang in there, Bob, and I hope things start looking up really soon.

[bobless in reply to Celtic]

thankyou Celtic yes the rheumy is doing everything he can to get a diagnosis and i really appreciate that its me im very stressed i feel desperate to find out whats wrong with me i was let down early doors when my local rheumy refused to see me i realise i have to hang in there it must have been hard for you Celtic in the early days im climbing the walls at moment did not sleep last night and my head feels like a pressure chamber and i feel like my entire body is racing its probably because i reduced on monday thankyou for your support Celtic

[Celtic PMRGCAuk volunteer in reply to bobless]

Bob, get an emergency appointment with your GP and tell him how ill you are feeling, exactly as you have told us - as sambucca has said, he needs to be pushed into trying to bring forward that neuro appointment.

Meanwhile, catnap as much as you can during the day to make up for the lost sleep at night, avoid coffee which will just hype you up further, and try and relax.....deep breaths.

[jinasc]

Bobless

You wrote "the rheumy has wrote letter to my gp to try to expedite app with neuro".

Have you checked with your GP, that

a) they got the letter and

b) they have acted upon it?

The Rheumy could not make a direct referral because of the Commissioning Groups.

You really need to push your GP into an emergency medical referral and if they won't

a) Speak to the Practice Manager and tell them you are not happy with your treatment

b) then either go to a Walk-in Centre or direct to A&E.

[bobless in reply to jinasc]

Hi sambucca i had phone call from Gp he said he never got the letter posted 23rd july i got it next day i told him that was strange i read letter to him he said its strange cos the consultant states he has made a app with neuro however he states that it is on same date as the one my gp made 6 -7 weeks ago which is on 22nd September he said he will try and expedite that one but cant do anything about the one consultant made i tried to ring rheumys secretary left message answer phone i need to clear it up im considering going to a walk in its weekend so i wont bother till monday or maybe see what comes of them expediating these apps thanks for advice Sambucca its appreciated

[jinasc]

No problem, that is what the forum and support groups are for and if we old hands can help out - we do. Just remember to pass on your knowledge when you can. Just remember, knowledge is power for you.

[bobless in reply to jinasc]

THanks Sambucca im fairly new to all this still wet behind the ears but if i ever see a post i can help with then i will do its great to have your help and others on this community as you probably realise its difficult talking to friends n family i live on my own and this site has helped me massively

[jinasc]

bobless

I well know what you mean, however if you visit this website pmr-gca-northeast.org.uk, you might just find something to interest you and also help you to explain to family, friends and carers (click on Support Us) and on the map click on it and look to see if there are any support groups near where you live. Nothing like a chat and a cuppa with others rowing the same boat.

There are also two other forums, different from these that you might also like to take a look at one is Patients.co.uk and look for the PMR and GCA thread.

[lesley2015]

Hi Bob- I was diagnosed with PMR and TA, 5 weeks ago, was on 40mgs Preds for 2 weeks, then reduced to 30mgs. Rheumatologist, said not to reduce any further then as still getting Temple/face pain, all PMR pain gone. However, to reduce in another two weeks to 25mg. So, I still have face pain, jaw and temple, albeit not as much. Symptoms from steroids really kicking in now, trying to be good food wise, but a struggle, Moon face properly arrived this week, ankles sore and swollen with water retention and trembles and insomnia! Working full time - this is causing me a bit of a problem, the condition and tiredness is causing problems with my sight. The consultant told me, because I have had the PRM for almost 5 years (undiagnosed) and the TA for about 2 years (being treated incorrectly for TMJ), it will take a while for those symptoms to subside.

Please could anyone tell me ... do they struggle to work full time with this? I am 56 year old female in a managerial, stressful position?

[bobless]

Hi lesley glad to hear your symptoms are reduced you seem to be the same with the affects of the preds although i have ongoing pain but it is reduced the insomnia and edginess we mood swings are the probs for me im sleeping just a couple of hours a night im retired now but i doubt there would be anyway i could work with this i am down to 35 mg preds reducing by 5mg a fortnight but have probs every time i reduce i started on 60mg when i get to 25 mg the reduction is then 2.5 mg a fortnight . The affects of preds and the stress of this discease must be almost impossible to work i find it hard trying to think straight at the moment so doing a managerial job must be very hard all you can do is listen to your body if it says rest then rest is best