Newbie here!: Hello! My first post on this forum... - PMRGCAuk

PMRGCAuk
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Newbie here!

Primarose
Primarose

Hello! My first post on this forum.

I have GCA, onset Jan 2017.

May I ask other sufferers how many appointments they have had with Rheumatology. I have had one proper appointment since 2017.

I have mostly self medicated. My doctor is quite helpful but when I mention certain problems I have with the preds he doesn't seem to think that they cause any of my problems.

My sympathy to fellow sufferers, this seems to be a very lonely DIY disease.

Prims

35 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Primarose,

And welcome 💐yes it s a bit isolating but hopefully now you’ve joined us you will feel part of a club! I know you’ve had GCA some time, but this might explain a bit more - healthunlocked.com/pmrgcauk...

You may also be able to find a local group if you look at the PMRGCA charity website, and plenty more info -

pmrgca.co.uk/groups/

I only saw my Rheumy twice, he wasn’t very interested - my GCA had been diagnosed by another Consultant (Ophthalmologist) and I was 6 months into a tapering plan agreed with GP!

Those with GCA should be monitored by a Rheumy, but it does seem to be a bit hit and miss. So long as your GP is capable of dealing with GCA then stick with him, you will see him more often and have a better relationship hopefully. But if you think he is struggling then you are within you rights to ask for a referral - would like to speculate how quick that will be though.

Me: GCA late diagnosis April 2012 (1st symptoms Sept 2010). Starting dose 80mg. In remission since Sept 2016

Hi DorsetLady

Thank you for your reply and kind welcome. In hindsight maybe my doctor is more helpful, he certainly saved my life on a home visit when he couldn't understand my illness. He took bloods there and then and within three hours I had to go to the A & E.

You say that an Ophthalmologist diagnosed your GCA, did you suffer any loss of sight? I say this because I was originally sent off to the A & E Eye Hospital and was told I was grinding my teeth and nothing was wrong with me.

I was started on 60mg of Prednisolone and felt relief within hours.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Primarose

Hi,

Yes unfortunately I have lost sight in right eye.

Because GP didn’t diagnose GCA, and went off on a tangent thinking it was frozen shoulder (left shoulder always worse than right) any and all aches were alledgedly related to that. That included head pains, jaw aches etc.

I was eventually diagnosed in A&E after 4 days when right eye was increasingly affected, day by day. By the time I went to hospital it was too late to do anything about reversing sight loss. Luckily Pred saved left one.

piglette
piglette
in reply to DorsetLady

Dear Dorset Lady, that is interesting my rheumie has diagnosed frozen shoulder too. I am pretty certain it isn’t and so is my osteopath. The rheumie gave me a steroid injection which had no effect. I don’t think it is GCA either hopefully.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to piglette

No a steroid onjection won’t do anything for GCA - I had 3 prior diagnosis!

Does work for arthritis though!

Hello Dorset Lady

I have read several of your mails, but didn't realise that you had lost the sight in one eye - like I have - until I saw this message. My Doc misdiagnosed my jaw ache and scalp pains (about 10 months ago) as trigeminal neuralgia instead of GCA. So gave me codeine instead of steroids. So I lost an eye. I - like you- am now taking beastly preds to try to save my second eye.

My family and friends tell me that I should be taking legal action for negligence. The trouble with that is that it takes energy, which I don't have at present. Also, I want to be someone who is planning to get better - Not someone who has to say "Look at poor sick me" all the time.

What do you think Dorset Lady?

I am from Surrey, by the way. We love Dorset - whereabouts do you live?

Arthur

Primarose
Primarose
in reply to arthur463

Hello arthur463

They said the same to me about having trigeminal neuralgia and the codeine didn't work. They even gave me a leaflet about it.

The Dental Hospital suggested GCA but the Eye Hospital had said no.

Prims

Hi DorsetLady

My apologies to you, I should have read your blog before I posted, I am so sorry to hear that you lost some sight in the eye. It must have taken a long time to come to terms with that.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Primarose

No apologies needed. It’s all sight in that eye actually, although the light still gets in so both eyes move together so if you didn’t know I don’t have sight in right eye it’s not noticeable.

Have explained it better in one of my posts - if you scroll down through my profile one day when you’re bored you’ll get a good explanation of what my situation is!

i am glad Dorsetlady came in there, she is definitely our go to lady for GCA. I am sorry that you have been cast adrift like this. you are, after all, suffering from a serious systemic disease. Was your Rheumatologist impressive when you had that one appointment? Could you have inadvertently dropped out of the system? It has happened to me. I just saw a stand- in Rheumatologist and she wants to see me again in 3 months. I was diagnosed with PMR in March 2016 and am on 7 mgs of Pred. no complications so far. To my mind you are more of a priority for specialist help than me. Get on to them. I live in South Yorkshire and feel well served by Rheumatology. Where do you live?

In the meantime stick with us and a very warm welcome to you. This forum has taught me everything I know about our diseases and so much more!

Thank you SheffieldJane.

On my first visit to Rheumatology I was told to reduce the preds ASAP but I still couldn't open my mouth, (jaw claudication) so they told me to reduce as soon as the jaw problem alleviated. Great emphasis was put on a Dexa scan and the importance of taking alendronic acid.

I live in the South West. While in hospital I was questioned and photographed and one consultant was amazed cause I was the first case he had ever seen with GCA. I had numerous visits from various doctors, I felt like I was in a Zoo.;-)

I am currently on 4mgs per day but have developed nasty sharp neck and shoulder pains, not sure whether this is due to the preds or as my doctor mentioned compression fractures.

Oh dear. So they treated you like a prize exhibit then dropped you - great!

The DEXA scan ( bone density) is important er to ascertain whether you need to take Alendronic Acid that comes with problems of its own and shouldn’t be taken unnecessarily.

You seem to have come down from GCA doses awfully quickly. Your symptoms do sound rather like PMR that often goes hand in hand with its nastier cousin GCA. Have you tried upping your Pred dose a little to see if the pain eases?

If painkillers don’t help I’d say it was PMR related. Do you have a switched on GP? Sometimes they are better than mediocre or uninterested Rheumatologist’s.

Hidden
Hidden
in reply to Primarose

Which hospital did you go to? I went to Musgrove in Taunton and diagnosed with GCA/PMR. Also had lots of visits from Drs and Consults.

PMRpro
PMRproAmbassador
in reply to Primarose

It could be muscle problems - myofascial pain syndrome is common alongside the PMR symptoms of GCA (not everyone gets that though) and will cause a lot of discomfort in the shoulders and neck. It will respond at higher doses of pred but then as you get to low doses the muscle problems resurface. If your doctor mentioned compression fractures - has he at least sent you for x-rays to see?

Primarose
Primarose
in reply to PMRpro

Hi PMRpro

My doctor did mention about an x-ray but thought my problem was doing too much heavy lifting.

I upped the preds by 2mgs last night and the pains went away, so I'm assuming I'm having a relapse at the moment.

I managed to book an appointment to see him tomorrow, maybe he can help with the stinging rash I've now got at the back of my neck at the same time.

PMRpro
PMRproAmbassador
in reply to Primarose

If pred helped the pains - it is very unlikely to be due to a stress fracture! Muscle problems can be as painful as bone ones. But to say it is "fractures" without proof is poor medical care.

arthur463
arthur463
in reply to Primarose

Hello Primarose

I don't know much of your GCA background, since I have only recently come across you. What was your starting dose of preds? - and how long has it taken to come down to 4 mg? I started at 60mg to try to save my second eye, and it has taken 8 months to get down to my present 9 mg. I have encountered several Meds along the way who wanted me to come down much faster, but I had the feeling that they were not familiar with GCA. Luckily I have a super Dragon Lady Rheumatologist here in Guildford, and I follow her tapering arrangements to the letter. Be careful Primarose - your eyesight depends on it. Find a Dragon.

Primarose
Primarose
in reply to arthur463

Hi Arthur463

I was started on 60mgs of pred in Jan 2017, I had CRP 150 and ESR 65 with raised liver enzymes. Until this present flare it's taken me 18 months to get down to 4mgs, but back up to 6 mgs now.

I'll look for a Dragon, hopefully one who doesn't blow flames!!

Hi Primarose and Welcome

I was diagnosed with GCA March 2015 and yep that is about the same amount of appointments I have had, one was exactly 7 minutes! What I found was the first year was quite a happy time because of the high dose. It is when you start to get lower you may run into issues and side effects. I also got an abrupt, not GCA related when I brought up issues and it was immediately dismissed. You must advocate for yourself. Read everything you can on this sight and you will develop a plan on what you should be doing as the inflammation is active and how to listen to your body and trust your decisions. There is so much help here and any question is a good one and any experience you have related to an existing or new issue may help another.

Primarose
Primarose
in reply to lindanna

Thank you so much lindanna, it's a comfort to meet fellow sufferers.

Yes I've had horrendous side effects but although I hate taking the preds, they have saved my life.

Hidden
Hidden

Hello and "Welcome" Primarose! So sorry you've found it necessary to join our group! I do hope your time here is short lived!!!! I was diagnosed with GCA in November 2017 and shortly after that it was realised that I had probably had PMR for 18 -24 months prior to that... I've seen the Rheumy twice privately and once on the NHS. She monitors my meds, has been great about ordering tests (for non PMR/GCA related things) and documents everything, but "NO," she is not overly concerned or interested in the side effects I experience with the Pred or the withdrawal symptoms I have. We (and by "we" I mean "she") chalks a lot of things up to one or the other but then just moves on... so the things that freak me out or annoy me the most, we don't address. I guess because there may be nothing she can do about them! Pred is Pred and it's going to f**k with you however it feels like it! And yes, you are 100% correct ... it is a "lonely" disease.... because we are tired and fatigued and don't feel (or literally CAN'T) socialise, so we are isolated and trapped within our own heads, feeling like crap... You are in the right place!!!! You will feel so much better now that you have found this site!!!!! Lot's of lovely, smart, experienced, compassionate people! Best of luck and I hope you start feeling better soon.

Primarose
Primarose
in reply to Hidden

Hi mamici1 and thank you for your reply

Even having GCA makes you feel a bit of a freak, when I mentioned my condition to a friend they gave me a blank look as though I was making up a new illness. I mainly tell folk that I have a rare autoimmune disease, they seem to like that!!;-)

Hidden
Hidden
in reply to Primarose

Yup, join the Freak Club!

Hello, my GCA kicked off March 2017. I was given no info, not even a support website and not seen for 6 weeks, then not for 5 months. Once I got a handle of this condition via this website, I was quite happy with that because I could do what I felt my body needed. My appointment in the September was a confidence sapping, dispiriting experience, so I was glad I hadn’t had that to contend with on a frequent basis while going through hell.

Primarose
Primarose
in reply to SnazzyD

Hi SnazzyD

I have found websites far more informative than my hospital appointment. I *was* given a leaflet which didn't help a tot. In fact in the follow up letter it actually stated that I was given a leaflet, in other words I have been well informed!! NOT.

I was pleased to find so much info on the net.

Hidden
Hidden

I have been very fortunate I was diagnosed in Dec 17 with GCA and have seen rheumatologist three times and am going again on 19th July each appointment has been for at least 30 mins He is very helpful and always follows up with a letter and plan for pred reduction. I started on 60mg pred. and am now down to 7mg. So far feeling good gradually getting my strength back and pray that this progress continues.

I hope you have better attention in the future.

Hidden
Hidden
in reply to Hidden

WOW! 60 to 7 in 7 months!!!!!! I'm green with envy.... I have gone from 80 to 30 in 8 moths! GOOD ON YOU! Continued success!!!!!

Hidden
Hidden
in reply to Hidden

Thanks Yes I hope so too

That is a stunning reduction in that time Balfront you are truly fortunate. Hope the progress continues for you.

Hidden
Hidden
in reply to Pepperdoggie

Yes I am so thankful especially when I read how many people are struggling. I do not know what lies ahead and am conscious that there is the possibility of a flare up. This site with so many lovely people is so informative and helpful. X

Hi Primrose - yes welcome to our very exclusive GCA Club!! I was diagnosed in August 2016 and saw the Rheumatologist at the BRI every 3 months for the first year, and any time I needed advice they told me to ring the help line - my doctor was also great but had never treated GCA before - I also had blood tests every two weeks for the first six months.

I see you live in the south-west, I gather there is a very good support group in Taunton which could be very helpful, at some of the meetings they have experts on PMR/GCA to speak on various aspects of the condition.

This Forum is fantastic, I have learnt more from it than any medic! - all the many side effects that you might experience which are sometimes really worrying - just ask and lots of members will be able to advise.

Good luck.

Primarose
Primarose
in reply to Sho-Sho

Hello Sho-Sho

It sounds as though you are being well looked after.

It's good to share with others and thank you for your post.

Prims

Hi Primarose, I was finally diagnosed in Jan 2017 after having a trial injection in 2016 which worked a miracle. since then I've seen the Rheumy twice, and then he sent me to another one in the same firm who was a sweetie and very helpful (unlike the first one!). I hope I get the second one every time now. I think I may as the first one doesn't like me!

Reading your message I am amazed that your doctor is so casual with you. You didn’t say how much Prednisone you started on, but I hope it has taken care of your symptoms. I was diagnosed with GCA last summer...had chronic head pain, jaw pain and double vision, then had a biopsy in which GCA was confirmed, started on 60mg....right now I am down to 6mg. If your GP is taking care of you and arranging for you to taper very gradually then that is fine. However, as someone has said in a reply if your GP does not know how to deal with this, you should see a Rheumatologist. You didnt mention if you are having symptoms, or how much prednisone you are now taking? Good luck and you will find this site a great help. Although people’s symptoms and care are different, you won’t feel so alone.

Thank you Stella3

I started on 60 mgs of Prednisolone, I am currently on 4mgs. Apart from the orrible stabbing pain in the shoulder and neck pain I feel sort of OK, just a bit tired now and then.

I was told that they wanted a biopsy but the results may not be good as I was taking high dose steroids. The biopsy was, apparently a bit squashed but it was positive.

While in the hospital they did an ultra sound, they said they were looking for "halos", I was watching the screen and did indeed see something resembling halos but they said no.

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