Relapse, and now I'm sure I'm a member of your elite club

[AnnS]

Since I last posted, I've been undergoing more tests because even my new rheumatologist suspected I have something other than GCA/PMR. Tapered Prednisolone from 40mg to 35mg with no problem, both ESR and CRP returned to normal pretty quickly and the doctors didn't seem concerned that most of the symptoms, including the somewhat atypical right-sided head and jaw pain hasn't ever resolved. Then, after 2 weeks I reduced again to 30mg and the very next day, developed horrible pain in my lower back. Because of the speed of the reaction I suspected it was steroid withdrawal, rather than a return of original symptoms so continued on 30mg for another 2 weeks. Then over the past few days I've been feeling worse and worse. I had a flu jab on Monday so hoped it was due to that but now, I think not. Today, I got out of bed and nearly fell over because my legs and hips wouldn't support me and the pain throughout my body was horrible, accompanied by a return of the excessive head sweating, return of breathlessness, and the addition of a new symptom that's been creeping up for the past three days - pain in the actual eyes themselves - both of them. My eyes also hurt when I move them.

So I staggered off to my GP to pick up the results of bloods taken on Monday and felt so awful by the time I got there, I made a complete idiot of myself by bursting into tears at the reception desk, in front of everyone. This did, however, prompt an immediate consultation with the duty GP who looked at the blood results they've had since Wednesday and noticed that my ESR had risen dramatically from 13 to 68 (goodness knows what it is now) so why wasn't I alerted by my own GP, who I know had checked the results? Anyway, she told me to go back up to 35mg of Pred. But by the time I got home, I still didn't feel comforted so e-mailed my rheumatologist, not expecting to get a reply on a Friday evening. (Why do emergencies always happen at weekends?) But to my suprise, he replied immediately and told me to up the Pred to 50mg - 10mg above my starting dose. He also said to go to A & E if symptoms don't resolve.

STILL feeling panicky because of the new and worsening pains in my eyes, I then took myself off the the Eye Hospital A & E for a check but although their website says they're open 'til 9:30pm, they're not. They close at 6:30 so I was made to feel a bit of a nuisance because they had to take me up to a ward to see a doctor. He did have a look at my eyes, checked my vision and did the tests for colour blindness but it wasn't the complete check with dilating drops etc. He could see no evidence of anything untoward going on so advised me to just do as I've been told but to go back if I'm worried. Why do they always say that? When you are worried, you go, and get sent away feeling like a bit of a hysterical idiot?

So... here I sit now, feeling like death, three months into this without a definite diagnosis, symptoms never really responding to high dose Prednisolone and now getting even worse, wondering if I'll ever be better and still scared to death that I'm one of the few people who are steroid resistant and therefore untreatable.

I'm not expecting any advice from you lovely people because I'm confounding all the doctors but I need to vent and I know this is a very supportive place to do so.

Tomorrow, my optometrist has agreed to fit me in in his lunch hour (arranged before this latest drama) so at least that will be one more opinion to add to the archives.

[pmrkitty]

Hello Ann, I'm pretty new myself and feel so bad for all your going through. Just remember, your eyes and the symptoms you are having cannot be taken lightly. If I were in your position I would probably end up getting kicked out of the doctors office because I would refuse to leave until they found out what the diagnosis is. Don't feel like a fool because you are in pain and afraid, you definitely have a problem and they need to find out the cause. I will be praying for you. Please keep posting and I'll keep praying. Soft hugs to you.

[AnnS in reply to pmrkitty]

Aww thank you for those kind words. To top it all, the GP gave me a form to apply for counselling because she thinks I'm depressed, due to the crying outburst. I'm depressed because I've been feeling incredibly ill for more than 3 months! Make me feel better and I won't be depressed any more!

[pmrkitty in reply to AnnS]

I was the same, crying at the drop of a pin. I got my doctor to prescribe 20 mg. of an anti depressant called Buspar. It is not addictive and just took the edge off. I took it for awhile after my last husband died and it did help. When I stopped talking it, there were no side effects. It might be something to talk to your doctor about. Take care and I hope you are feeling better soon.

[AnnS in reply to pmrkitty]

That's something else I've just added to my 'useful informaton' document, thank you. I will definitely mention it to my doctor if I can't get a grip of myself because I know being miserable will only make things worse. Many years ago I had a nasty experience with anti-depressants so I've avoided them ever since. When my husband died five years ago I was given Propranolol to stop my heart from racing and that seemed to calm me down too so I've been taking the odd one lately but, of course, that doesn't help with the miseries.

[SnazzyD in reply to AnnS]

Um, I would suggest the doctor try taking 30mg of Pred and not be a little tearful on a good day, let alone when things are tough!

[AnnS in reply to SnazzyD]

Hahaha indeed! Actually, whilst reading everything I can find on these wretched conditions, I did fine one renowned opthalmologist who developed GCA himself, which seemed rather unfair after it appeared he'd dedicated most of his career to investigating vascular eye issues for other people.

[PMRpro Ambassador in reply to AnnS]

Your GP wants to do some reading! Depressive mood is part of PMR/GCA and a load of other a/i disorders and variable mood is also a side effect of pred. And, as you so rightly say, being chronically ill is bad enough, not knowing what it is is even worse.

Like Snazzy - I suggest asking HER to try it for size before assuming you are depressed.

[SheffieldJane]

Oh Ann I am so sorry! That all sounds hideous and frightening and unfair!!!

I am not sure what the doctor expected to see when he looked into your eyes! Unless I am radically wrong, what is visible to the naked eye with GCA?

I would be as confused and as scared as you. It's awful to think of you sitting there with horrible scenarios running through your mind. You need someone to hold your hand, here's my virtual hand 🤝.

If you are someone who is steroid resistant and you do have GCA, then I expect you will be offered Tocilizumab.

Courage! All the blessings for the next stage in your journey. Please let us know what happens. Hugs Jane x

[AnnS in reply to SheffieldJane]

Thank you very much Jane (grabbing your virtual hand). I think the doctor was exploring for an inflammatory cause of my newly developed eyeball pain as that's apparently not a common feature of GCA. Because it was out of hours, it was all a bit cursory. Yes I've read about Tocilzumab but that sounds quite horrible too and can have extremely dangerous side effects. There's not too much good news to cling on to with this stuff, is there? My next victim is the optometrist in the morning, if I feel well enough to get there. Perhaps he'll add some pearls of wisdom to the quest to understand what's going on... although I'm not holding my breath.

[PMRpro Ambassador in reply to AnnS]

There are probably many worse options! It is a new drug, being used in the USA and they've already had their hands smacked and facing a class action for NOT including all the potential cardiovascular effects on the list. It doesn't make it any worse than any of the other similar peer RA drugs, just they made it sound slightly better by the omissions.

[Asbeck in reply to AnnS]

AnnS I have had GCA for more than 4.5 years. I get eye ball pain. I am in the US. There is an eye hospital where I live. They always ask me if I have eye pain. Anecdotally, I think that I get it when I am on barely enough Prednisone. Over the years I have tried to take "just enough Prednisone."

[AnnS in reply to Asbeck]

I paid yet another visit to our eye hospital but they seemed totally unconcerned about the eye pain. They had a good look and could see nothing inflammatory so sent me away, making me feel like a bit of a hysterical idiot once again. So yesterday I went to see my optometrist who said he thought it was being caused by extremely dry eyes. He had a good look and did scans of behind the eyes and said they look totally healthy. So I guess I'll have to think of it as "just pain", although that's pretty difficult at the moment. Upped the steroids to 50mg three days ago and still not feeling much benefit at all.

[blueisgreen in reply to AnnS]

Just curious. Did anyone do a biopsy to see if you have Giant Cell Arteritis?

[SheffieldJane]

Hanging on to you!

I get awful eyeball pain, it is as if my eyes are going to burst. It follows reading too much, or being at a screen for too long. I have posted about it before, I think. No solution except resting and closing them. I use dry eye drops too. All eye examinations fine except for the beginnings of cataracts, too soon to do anything.

The side effects of everything sound horrendous these days ( because of litigation). I agree the "wonder drug" Tocilizumab takes the biscuit. I may have to take it because of Aortic Stenosis that may have been caused by Vasculitis. It's like white water rafting, gliding along knowing there are Rapids ahead!

Take care, thinking of you. Jane x

[AnnS in reply to SheffieldJane]

I've just been reading all your posts and it looks as if we should all be hanging on to YOU! I'm so sorry you're having such a wretched time too at the moment.

I think my rheumatologist is investigating wider effects of vasculitis for me also, particularly because I had a similar episode two years ago when it was decided I was just having a flare of my existing autoimmune conditions. Although many of the symptoms did eventually disappear, some did not and I now think I've probably had something nasty smouldering away all this time, now suddenly rearing its ugly head for all to see. I had a chest, abdo and pelvis CT scan yesterday and am waiting for an MRA of the brain and neck. I'm also having an Isotope Bone Scan on Monday because I think the doc also wants to rule out certain types of cancer.

Really, I think what I admire most about many of you people in here is your ability to be brave, rather than panic like I am at the moment. Normally I find that knowledge is power when it comes to diseases but the more knowledge I gather about this, the scarier it seems to become. I guess the good thing is that we're all still here to discuss it.

Do let us know how you get on with your ultrasound and I think I'm now going to get blood pressure readings from both arms... but tomorrow... because I've had quite enough stress for one day xx

[SheffieldJane]

You sound perfectly rational to me. I was transformed by being given a diagnosis. Prior to that I honestly thought I had, had my chips. If you are an American, then I thought I was toast. Finito !Kaput!

We all get scary days. This forum helps a lot!

Past my bed time. All will be well, all manner of things will be well, someone quoted Julian of Norwich, was it Jinsac?

[PMRpro Ambassador in reply to SheffieldJane]

No, me! I have a bit more religious background than jinsac - and she'll be the first to say so.

A couple of months ago I read (in passing while looking something up for someone else) that the anti-arrythmic I'm on should not be used for atrial fibrillation in patients with sick sinus syndrome who don't have a pacemaker. I've been on it for well over 5 years - for a dx of atrial fibrillation due to SSS and no pacemaker...

Hmmmmmmmm............

[SheffieldJane in reply to PMRpro]

It just shows you how vigilant we must all be.

Very glad you are still here PMRPro! What now??

[PMRpro Ambassador in reply to SheffieldJane]

Cardiology appointment in January. We wonder if it is a new contraindication - but in the meatime I shan't be reducing my pred too far as that seems to make any woozy moments increase...

[SheffieldJane in reply to PMRpro]

Please let us know how you get on!

[Jackoh]

So sorry AnnS that you are experiencing so many problems and appear, at the present time anyway,not to be moving forward . Let us know how you get on. Yes you're right- even if we don't have the answers. this is the place to vent. We understand your frustration, pain, confusion and fear and totally understand how and why you got upset at the doctors after so many months of feeling so rotten. I'm sure as you carry on and persevere then things will hopefully become clearer. It's sometimes the unknown that is worse. Best wishes Jackie x

[Sandy1947]

So sorry you are having such a rough time. My thoughts and prayers are with you. Of course you are anxious and depressed!