Help on GCA symptoms and taper

[MichaelW]

Hi there,

I’m a 61yr old male who was diagnosed with GCA in July 2017. The basis for the diagnosis was severe headache (rhs top of head),neck pain,tender scalp,stiffness in lower limbs and generalised discomfort across chest. Crp and ESr were also raised - 61mg/L and 44mm respectively. I have had no visual disturbances and a subsequent eye test revealed a healthy optic nerve with no loss of visual acuity.

My GP felt that my treatment could be handled by him and I agreed - subsequently I feel that I made the wrong choice.

I was prescribed 40mg Prednisone,Omeprazole 20mg,Adcal,Losartan 50mg and Risendronate 35mg. After reading info on this forum I stopped taking the Risendronate and requested a DEXA scan which is scheduled for the coming week.

As others have reported within a couple of days on the Prednisone I felt wonderful with all symptoms removed or only of a trivial nature. A blood test on the 20/07/17 gave Crp at less than 4mg/L and ESR at 5mm. I stayed on the 40mg for 4 weeks before dropping to 35 mg in early August. I stayed on 35mg for two weeks before dropping to 30 mg. After a few days on 30mg I felt uncomfortable and went back to 35mg. At this time I also developed a pain in my lower LHS jaw/gums which started as a number of stabbing pains and has developed into a constant ache - my suspicion is this a neuralgia type pain.

Jaw pain wasn’t helped by 35mg so after a week I went back to 40mg at the start of September. I also arranged a blood test on 5th September-Crp less than 4mg/L , ESR 2mm. 40mg had no impact on jaw/gum pain.

Based on these results I dropped down to 35mg for two weeks and then to 33mg for two weeks followed by 32mg for three weeks. This week I have dropped to 30mg and after three days I’m experiencing headaches and a general feeling of unease.

I went back to my GP when I developed the lower jaw problem and he insisted that I should go to my dentist despite having had a recent checkup. I got an appointment and my dentist confirmed that he could find no evidence of a dental problem having also done an X-ray.

Went back to GP and he suggested that I see an orthodontist at which point I asked for a referral to my local hospital rheumatologist. As an urgent referral this could take up to 18 weeks

Sorry this has gone on so long but I’m feeling somewhat desperate and alone at the moment. This is my first post so I will make any subsequent posts much shorter.

In summary would appreciate any advice on next steps regarding Prednisone dose and any insight into lower jaw pain. I should have mentioned that I have no problem chewing so don’t think it is claudication

As this is my first post can I also take this opportunity to thank all the contributors and moderators for this forum - it really has been a tremendous help over recent months

[Rose54]

Hi

Welcome to our site

Have you considered Sinus problems

Not saying it is and with GCA and pain in that area you cant be too carful

Its something I suffer from and have for years

Central Heating ,Air Conditioning .Fans, Drafts always set it of

just catches me sometimes when moving around turning my head or looking down in that area then its gone again.

The experts will be along later with more advice

[Grammajoy]

I am waiting for dx of GCA with similar symptoms, double vision mainly. My primary md retired and rheumatologist gave me a diet plan😏 And prescribed 40 mg prednisone and neurosurgeon ordered 2 separate MRIs of head which are scheduled this week. My son had suspected GCA several years ago which was stage 4 sinus cancer which he survived but there seems to be such a lack of accurate knowledge in the medical communitys about these problems. I will be watching for your posts.

[piglette]

If you have GCA you should definitely see a rheumatologist and your doctor should have referred you. With PMR it can be handled at the Primary stage but not GCA.

[PMRpro Ambassador]

If GCA is suspected it is not urgent you need - it is EMERGENCY! I'd be having words with your GP I think! A GP can deal with straighforward PMR. That you obviously have - at least superficially. The persistent jaw pain may be GCA or it may be something totally different and the GP is not experienced enough to tell the difference.

Where are you and is private an option - even just for a single appointment?

[DorsetLady PMRGCAuk volunteer]

Hi Michael, and welcome,

Agree with PMRpro that your GP is out if his depth with this.

If other obvious problems have been ruled out, then it could well be your GCA, so you need to get it checked, as an emergency referral not an urgent one. Even if, as PMRpro suggests paying for a one-off consultation. If you have GCA, the consultant will then put you on his NHS books.

Your starting dose of 40mg is at the lower end of the scale for GCA, so I would suggest that maybe your inflammation has never been fully controlled despite the CRP & ESR readings and that you stayed in it for 4 weeks.

You need to get this sorted out sooner rather than later, for your own peace of mind.

[MichaelW]

Thanks for all the input - I will try to book a private consultation ASAP.

I plan to keep posting updates which may help others in a similar position. As I don’t know much about the etiquette for forum posts should I start a new thread each time or add to this post?

[PMRpro Ambassador in reply to MichaelW]

It really doesn't matter. If it is a new topic though a new thread is better because more people will probably see/react to it.

I asked where you are because maybe someone can recommend a sensible rheumy. Rheumies and PMR/GCA are not all the same...

[MichaelW in reply to PMRpro]

I live just outside Stevenage in Herts. Local private clinic is run by Spencer Ellis

[PMRpro Ambassador in reply to MichaelW]

Is he good? I see his special interest is multi-sytem rheumatology, lupus and stuff.

If it were me I would accept the daunder round the M25 to Chertsey to Dr Rod Hughes - who a LOT of people on the forums go to when their more local options fail them. His speciality interest covers PMR/GCA and he is also interested in sports medicine and musculoskeletal problems which I think makes him particularly good for PMR.

He does NHS at St Peters and private next door at Runnymede BMI.

drrahughesrheumatologyltd.com/

I have no doubt everyone who sees him would say go for it!

[AnnS]

Hi Michael. I'm very interested in your post because I'm in a similar position and I feel desperate too. I've been suffering badly since the beginning of July, first with typical symptoms of PMR but quickly followed by right-sided head and jaw pain. The jaw pain is not as typically described, i.e. it's not claudication that happens when I chew. It's often constant pain and sometimes stabbing pains. The head pain is the same.

I have other autoimmune diseases which is confusing things but I started with 40mg of Prednisolone as a precaution, then tapered through 35mg to 30mg. After a few days on 30 the symptoms returned with a vengeance, my GP failed to alert me to a sharp rise in ESR and now the rheumatologist has me on 50mg. I've been on that for a week and still feel totally awful but the jaw and head pain is just starting to subside so I'm convinced it's atypical GCA, even if they're not. I'd say it's definitely part of the inflammatory process anyway.

I've now seen three rheumatologists, have been to A & E five times and seen my GP regularly and am quite shocked at how cavalier they are about urgent treatment or, rather, lack of it and how I've been made to feel like an over-anxious old person who lives alone and is not coping. I'm 63 and was having a very nice life before this struck... actually. Neither is anyone acknowledging just how systemically ill I'm feeling and how all I can do is sit, very still, at home, waiting for the next medical appointment. At least the rheumy I have now is interested and trying his best to get to the bottom of what's wrong but even though I'm currently seeing him privately, it's still taking a devil of a long time to get all the tests completed and meanwhile, I've become almost totally disabled and feel wretched. Now the GP has suggested I'm depressed and might benefit from counselling! Don't they understand? I just want to feel better, stop being scared and rejoin society. Then I won't be miserable any more.

Anyway, I will follow your posts with interest and will also update mine regularly, in case it's of any help to you. I'm seeing my rheumatologist again on Thursday.

I agree that this is a fantastic forum and has already been a great source of information and comfort to me.

[PMRpro Ambassador in reply to AnnS]

No - they don't understand. The ones who do are great - but others are far too keen to tell a formerly healthy woman that she is depressed and write it all off to that. For heaven's sake - anyone would be depressed when they are in constant pain and are being dismissed by the people they look to for help.

There are people who need 60, 80 or even 100mg to get the cranial symptoms under control. No two people are the same - but that doesn't seem to sink in with far too many doctors.

[Jackoh]

Firstly AnnS so sorry that you are having a real battle getting someone to take you seriously and believe you when you say you feel so ill. I can relate to this and also to you MichaelW. I started with PMR symptoms in Nov 2014 and even for that my GP thought the PMR was very slight because my ESR and CRP figures were very low ( 16 and 1 respectively) When I had reduced to 10 mg from 15 mg over a year( Jan 2016) I began to have very bad headaches on the top of my head with stabbing, boring pains at the one side , occasional very bad pain at the back of the head and earache. My GP refused to believe me that I thought it was GCA and although with her agreement I eventually went up to 20 mg from 10 mg in stages, I felt very unwell. She was looking for eye sight problems and temporal Arteritis and I didn't have any of those symptoms. I did, as suggested to you MichaelW, go privately to see Rod Hughes ( I used to live in Surrey as it happens so I know the area but now live in the Midlands so quite a journey!) He listens!!!! I explained my symptoms and he diagnosed cranial GCA . It was so good AnnS to have someone believe you and take you seriously and for you just to be fobbed off by saying that you are depressed is so annoying and condescending. I think we can( well I did anyway) feel very weepy and upset because we feel so ill and there doesn't seem to be a way forward. I think as we've said before that everyone is different, the dose that folk need to control the symptoms is different:- for my own part 21 mg of Pred seemed to hold the head symptoms. For others they might have to go much higher.

So in conclusion I would really recommend Rod Hughes, MichaelW. I had two private appointments and now see him under the NHS. AnnS know that you will get through this, folk on here do believe you!! And have some idea of what you're going through. Things will get better. Let us know how your appointment with Consultant Rheumy goes on Thursday. Best wishes Jackie X

[MichaelW in reply to Jackoh]

Thanks for your post and recommendation. Have sent email to book an appointment

[AnnS in reply to Jackoh]

Thank you for the encouragement, Jackie. I just can't understand why I'm feeling worse, not better, on the increased dose of 50mg Pred. I had just one day last week when I did feel a bit better, but since then it's been downhill again and now I can't even stand for 10 minutes without feeling weak to the point of collapse and a bit nauseous... yet another new feature. In A & E on Saturday they established that my ESR and CRP were dropping nicely again but it certainly doesn't feel like it.

My Thursday rheumy appointment seems a lifetime away and I'm just scared that something bad's going to happen in the meantime. I wish I'd gone to see Rod Hughes earlier on because I actually feel too ill to get there now. However, I am initially impressed with my new local rheumatologist's eagerness to get a proper diagnosis and hopefully he'll have some of the test results on Thursday so I need to give him a chance. Right now though, I'm just wishing I lived with a doctor in the house because this is really scary stuff!

Sorry to hijack your post, Michael. I'll be very interested to hear how your appointment goes.

[Jackoh in reply to AnnS]

50 mg is quite high and has side effects of its own as well as PMRGCA symptoms so some of your anxiety and other symptoms could be attributed to the steroid dose you're on and could get better as you're slowly able to reduce. Hang in there , try to relax and rest and the very best for Thursday. I don't know your circumstances but if you have someone to go with you and listen with you to the Consultant I'm sure that would help. Best wishes Jackie x

[MichaelW in reply to AnnS]

Hi Ann

Don’t worry about adding to this thread - that’s how we all learn. I’ve become very wary of blood test results for this condition and the emphasis placed on them by medics. From my perspective the symptoms experienced by the patient should be the determining factor but this involves careful listening to the patient - a skill that seems in short supply

I hope you get some joy on Thursday - thinking of you in the meantime

Michael

[AnnS in reply to MichaelW]

I totally agree. All the trusted sources say that resolution of symptoms AND falling blood inflammatory markers should influence the treatment but nobody has been interested in the fact that my symptoms are still there - not my normally trusted rheumatologist, not my GP, not the A & E docs, not even the Eye Hospital. Each time, they take basic bloods, see the ESR and CRP are reducing, suggest I'm just over-anxious and send me home. My last A & E discharge notes said I presented with a headache... which I didn't. I presented with a wildly irregular heartbeat and stabbing pains in both eyes. I feel like I'm starring in one of those zombie films where you speak but nobody hears you.

[HeronNS in reply to AnnS]

Take someone with you next time. Having a friend or other trusted person to support you is helpful, not least because the doctor is suddenly aware they are being observed by someone other than the patient and hopefully will pay more attention to what the patient says.

[AnnS in reply to HeronNS]

Hmm... thereby lies a problem. There isn't anybody now. I'm used to living with chronic diseases, I've always been perfectly able to express myself, get the responses I need and sort everything out but actually, as soon as I turned 60, I noticed a big difference in how I'm regarded. Now suddenly it seems like I'm an old person who lives alone, doesn't cope well and gets over-anxious. This current awful situation has been made a lot worse by the total failure of my usual rheumatologist to respond properly. This means that nobody who's now treating knows me from Adam so they can't even see how different and ill I look. My dermatologist was really shocked and it was him who recommended my new rheumatologist. I know you're right because when my husband was being treated for cancer, it was often my presence (and/or intervention) that got him what he needed. It was often a real fight too.

[HeronNS in reply to AnnS]

If there's no family member there may be some other way you can find a support person. Possibly through a church or other religious institution or a senior's centre. Your local politician may be able to put you in touch with an agency where you could link up with a suitable companion for this expedition. Here, for example, there's a community health board and I think if I were in your position I'd approach them first as they offer many public programs and might well know someone who could be an advocate. I don't know where you live. There seem to be a lot of PMR/GCA support groups in the UK for example.

[AnnS in reply to HeronNS]

I'll have to give it some consideration. To be honest, I'm only 63 and until this vile thing struck, didn't even think of myself as old, and certainly not feeble, because life was busy and full. I live on the Sussex Coast and I think there may be a support group in the nearby town of Worthing but I was waiting for a diagnosis before contacting them. I do have a sister but she's got horrible issues of her own at the moment and I don't want to add to them.

[HeronNS in reply to AnnS]

It's astonishing really how many of us are blindsided by this disease. First of all, most of us have never heard of it, and secondly most of us appear to have been very active people with a youthful mindset. I certainly fit into that category, although I was older than you when diagnosed. Was so sure I'd looked after myself well enough that I'd never get any of the diseases of old age. Sure got my comeuppance for being so smug! 😲

[AnnS in reply to HeronNS]

Hahahaha! In my observations, it seems to be the miserable old ******s with absolutely no spark or imagination that sail through old age.

[PMRpro Ambassador in reply to AnnS]

Do you have a smartphone? Try setting it to record a consultation and tell the doctor it is because you want to be able to check back what was said because you forget.

[AnnS in reply to PMRpro]

That's a good idea. Normally I take copious notes but I've got a numb right hand at the moment so the phone would be better.

[daworm]

it could be TMJ...it seems since I've started this PMR/pred journey that I unconsciously clench by jaws and sort of grind my teeth....I get a slight jaw soreness once in a while and one day my right ear sorta went def or felt real weird...but no other GCA symptoms so my Dr...and me, don't think I have advanced to that....certainly something to get checked out by you though.....my wife gets TMJ once in awhile and its not fun and hard to diagnose....just my two cents...

[MichaelW in reply to daworm]

Thanks for the post. Given that the pain is there all the time and feels “electrical” my suspicion is that it is an inflamed blood vessel pushing on a nerve. Hopefully I’ll get some clarity from consultant. Will keep you posted