Upcoming appointment with Rheumy Consultant - people's experiences/advice appreciated

[BladesLover]

Hi all

Firstly, just wanting to explain that my user name is a reference to the nickname of the football team I support - I'm not interested in knife crime or anything like that! I might change it actually to avoid any confusion or concerns!

I've got another appointment with Rheumy Consultant next week in relation to my GCA and treatment. Currently on 15mg Prednisolone with plan to reduce to 12.5mg from 1st Sept. Also weekly Tocilizumab injections (started 24th June).

After initial improvement following diagnosis in Feb, I returned to work early April but then went backwards and had to go off sick 2nd July - exhausted a lot of the time with spacey fuzzy-headed feeling. Very little mental, emotional or physical energy or stamina. Probably some improvement but still off sick and not feeling ready to return yet. The bottom line is that I don't feel at all confident that - should I return to work - I won't soon need to go off sick again quite soon.

The following are the things I want to raise with the Consultant and I'd be very interested if anyone has any views based on their own experiences.

Firstly, the main thing that I'm feeling unclear about is to what extent the way I'm feeling is relatively "normal" (or not) given the GCA and adjustments in medication. My most recent conversation with Rheumatology was with a Nurse on 14th August who told me my blood test had come back normal. To be honest, my impression was that she couldn't really give any explanation for the way I'm feeling. However, since then, after reading up on the subject - on this forum and also Kate Gilbert's book on PMR/GCA - it seems that the way I'm feeling isn't at all untypical for people with GCA and / or undergoing changes to steroid doses.

The GCA booklet I was given lists fatigue as one of the most common symptoms of GCA. However, one thing I'm unclear about is whether or not I should still be experiencing any symptoms of GCA if my blood tests are coming back okay? Are stable blood tests indicating that I no longer have any inflammation? If so, is it possible that it's the medication that's causing the fatigue?

Secondly, the Tocilizumab. In the booklet I was given, it says Tocilizumab will work within three to six months, if it's going to work at all. I started it 24th June so am not yet at the three-month mark. What's happening before I get to the point at which Tocilizumab is effective, bearing in mind that the steroids are being reduced? How will I know whether or not the Tocilizumab is working? Is Tocilizumab also classed as a "steroid sparing" drug in the same way as Methotrexate?

The booklet also states that Tocilizumab can cause dizziness. Could this partly explain the spacey feeling I've been getting? However, the spacey feeling pre-dates the start of Tocilizumab so is there another possible explanation - the steroids, the GCA?

Is it possible that thyroid and / or blood sugar levels and / or vit B12 could be issues?

Thirdly, prognosis. My employer's Occupational Health doctor wants me to ask about this (to inform discussion about return to work) but acknowledged this is probably difficult given the unpredictability and variability of the condition and recovery from it.

Obviously, I am going to raise these queries with the Consultant next week but, in the meantime, I'm interested in any views on / experience of these issues.

Many thanks all.

[DorsetLady PMRGCAuk volunteer]

If HU haven’t objected I wouldn’t be too concerned…and it relates to what Sheffield is known for. However, there may be other footie fans who object [rugby fan myself so no, issue here😏!]

I did give a couple of links in your first post re general info and GCA experience, and what you describe is pretty normal.

Blood tests should be okay - but that just because the Pred is keeping the daily shed of inflammation under control - doesn’t means it’s gone nor is it doing anything for the underlying GCA [which also hasn’t gone anywhere].

Maybe re read my info post- and if you wish I can send you a copy so you can show it to your Occy Health people. Someone recently took it to a tribunal to explain what illness is about and how it impacts.

healthunlocked.com/pmrgcauk...

Cannot comment on TCZ/Actemra - but others will.

Certainly sounds as if you aren’t in a good enough place to be working - others will also be along to discuss their situations… Have your employers made all the adjustments they can to help?

Sorry- got distracted - Spitfire just flown over 😊…

[BladesLover in reply to DorsetLady]

Thank you for your reply. I think what I'm struggling to understand fully is that the Pred is keeping the inflammation under control and the blood tests are okay - but the GCA hasn't gone anywhere: - So is the fatigue / spacey feeling / tight feeling in temporal area down to the actual GCA (despite the inflammation being under control) or the medication prescribed to treat it? Or a combination of both these? And if it's partly the GCA, why is this if the inflammation is under control? Does it indicate that there's still some inflammation but not enough to show up as a problem on blood tests?

Your info post is really helpful and much appreciated but, if honest, I'm not currently at my best cognitively to take in a lot of information. And not at my best psychologically either (trying to give myself some time to be concentrating on other things).

Employers have been fine so far. I'm still signed off and we haven't really got into details re adjustments. Occy Health doctor wants to see report / letter from Consultant after my appointment tomorrow and then take it from there.

Thanks again

😊

[DorsetLady PMRGCAuk volunteer in reply to BladesLover]

Just to recap - the Pred doesn’t cure the GCA-that is still there chugging along - but the Pred does control the inflammation caused by the GCA. So that means pain is usually controlled and blood markers are kept at a reasonable level.

Would say spacey feeling, cognitive issues and fatigue are more likely to the underlying GCA , although Pred can cause that as well [not always easy to say which, probably both]. Any autoimmune condition has that effect and is often referred to as brain fog

As said, the excess is produced every day you have GCA, but the Pred works on it and dampens it down - however if you reduce medication too quickly or if the GCA flares [which is does occasionally] then you may feel those issues escalate.

Just seen you reply re tapering - much too fast. Below 10mg is needs to be much slower - not sure what plan your Rheumy is following - but they aren’t doing you any favours.

This are usual guidelines [wherever you look] -

A typical glucocorticoid tapering schedule for GCA

1. 40–60 mg oral prednisolone: initial dose for patients with active GCA

Continue at same dose until GCA symptoms and acute phase markers resolve

Purpose: induction of clinical remission

2. In clinical remission and >20 mg prednisolone Reduce daily dose by 10 mg every 2 weeks

Aim to reach 20 mg prednisolone once the patient has been in remission for 4–8 weeks

3. In clinical remission, >10 mg prednisolone but <20 mg Reduce daily dose by 2.5 mg every 2–4 weeks

4. In clinical remission and on ≤10 mg prednisolone Reduce daily dose by 1 mg every 1-2 months.

NOTE - If symptoms suggestive of GCA relapse occur during taper, return to higher dose

[BladesLover in reply to DorsetLady]

Thank you for this. It is detailed isn't it?! My Consultant seems to think my taper plan is okay because I'm taking Tocilizumab also. I guess I'll see how it goes. He says it can be reviewed at any time and changes made if needed.

[DorsetLady PMRGCAuk volunteer in reply to BladesLover]

Okay - he might think it's fine, and it may well be correct [hope so] .. and good to see he is willing to review and amend.. We hear of too many that aren't.

Good luck..

[BladesLover in reply to DorsetLady]

Thank you! 🤞

[PMRpro Ambassador]

Blades are rollerblades aren't they???

Just because the inflammation is under control doesn;t mean you are cured - neither pred nor Actemra are cures, they are management strategies to relieve the symptoms due to the inflammation - mainly pain and stiffness. The actual underlying disease process is untouched, it is chugging away in the background, still trying to create inflammation but the pred and Actemra get in the way of that and stop it developing in situ. But the disease process is still attacking your body and most people describe that as being a bit like flu.

Pred causes a lot of the effects you are feeling - and it is difficult to distinguish which is what. I am on TCZ, I have had no noticeable adverse effects but I know some people do. You are on other medications too I imagine - a polypharmacy of "stuff" doesn't have the same effects as each drug individually. Bit like individually people do certain things - as a crowd they may be unrecognisable.

Actemra works differently to the other so-called steroid sparers. Inflammation in GCA is caused by a cytokine called IL-6 attaching to receptors on the surface of cells to make an active "weapon", a bit like a person sitting in a gaming chair and holding the joystick to play a game. TCZ rushes in and takes all the available seats so the IL-6 can't get seated. Until all the seats are occupied by TCZ, there is still some potential for the IL-6 to cause problems. Unfortunately, GCA inflammation doesn't always just have the IL-6 cause underlying it - and TCZ can only work against IL-6 - there are at least 2 other possible mechanisms and if they are in play, you continue to need pred to manage them. So that means that starting TCZ isn't an instant solution. My rheumy reckoned it could take 2 to 3 months to really be fully effective.

Can't say much about GCA and work, I "only" have PMR but a particularly tenacious verison. I had brain fog ith it, I was on 15mg pred, I probably had brain fog with that but it was better than with PMR! Eventually I adjusted to it and my memory and skills were back close to beforehand - I think. But we are the worst judges - due to the pred which does affect judgement. Depending on what you do for a living - you may be totally unfit for the workplace- as much for the sake of others as yourself.

Prognosis? We would say impossible to give one. It isn't likely to kill you but how long this phase will last is difficult to say. I worked all through - I was freelance, no work, no income. And I was my own boss. Was my work up to scratch? Clients seemed happy enough - I was a translator. What I was aware of was that sometimes I had to read something a few times to be sure I had it right. And go back to check. Which slowed me down. And I got tired more easily - difficult when there was a tight deadline to meet. Everyone is different - and don't believe the rheumy if he says it will be over in 2 years. It might. It might not!

[BladesLover in reply to PMRpro]

Thank you for your reply. I understand that the GCA isn't cured but just feel a bit unsure as to what is causing the fatigue / spacey feeling / tight feeling in temporal area if the Pred is reducing the inflammation and managing the symptoms. Does it mean there is still some inflammation (but not enough to show up on blood tests)? Or is it the Pred itself that is causing these feelings? (Or a combination of both GCA and Pred?) Sounds from what you say that it's very difficult (if not impossible) to know?

Thanks again.

[PMRpro Ambassador in reply to BladesLover]

That is a fair summary. There is damage to the blood vessels - it doesn't heal overnight. The underlying autoimmune disorder is still attacking the tissues - like a dripping tap, there is a puddle each morning to mop up with the pred. There must be enough inflammation for long enough to trigger the liver to produce the proteins to raise the markers - but the inflammation has been there. Some people never show the raised markers while on pred which confuses doctors. Even with Actemra, the super-expensive steroid sparers that goes direct to the inflammation and the markers fall, it was realised that that doesn't mean there isn't ongoing disease affecting the vascular system and causing longterm damage to the tissue.

[Dance62]

Morning I think the most interesting word here is "normal". When I was diagnosed last September with GCA (aortitis) I was hospitalised for a week and blasted with industrial strength quantities of pred. When I asked, on discharge, what I could expect to be able to do going forward I was told I should "live my normal life". I very quickly found out that that was fine, if your normal life consisted of getting up, having a shower, and sitting in a chair all day.

Similarly, I've had issues with blood tests coming back "normal" when CRP levels were still jumping up and down.

I still find the fatigue aspect overwhelming sometimes and have had to really adjust what I do and pace myself better.

I think the only was through this is to give yourself time. When I went back for a follow up after 6 weeks, I saw a different rheumatologist who suggested that I couldn't expect to feel anything like 'normal' for at least 3 months and that I should very definitely only go back to work on a phased return basis . I was lucky, I'm a primary school languages teacher and my school was very supportive.

Good luck with your appointment.

[BladesLover in reply to Dance62]

Thank you for your reply. Yes, I was in hospital too (January to February this year.) Diagnosed with temporal arteritis. At the moment, the problem for me is combination of fatigue / spacey, fuzzy-headed feeling and tight feeling in temporal area. I understand that the GCA isn't cured by meds but what I'm struggling to fully get my head round is what's causing these feelings if the meds (as indicated by blood tests) are apparently managing my symptoms and reducing inflammation. Is it possible there is still some inflammation but not enough to show on blood tests? Or is the meds causing these feelings? Or a combination of both these things?

Thanks again.

[Merryfield]

re: prednisone. I never had GCA but started at 30 mgs for PMR two years ago. Am now down to 2 mg pred. Tests are ok tho pred kicked me into diabetes very quickly. I guess I would reduce the pred very slowly. 2.5 mgs seems like a big jump. Good luck.

[BladesLover in reply to Merryfield]

Thank you. I started on 60mg Pred in Feb this year and now on 12.5 (with a few increases back up along the way). I'm following Rheumatologist instructions! His plan for me is 10mg from 15th Sept, 7.5mg from 29th Sept, 5mg from 13th Oct, 4mg from 27th Oct, 3mg from 10th Nov, 2mg from 24th Nov, 1mg from 8th Dec. I've no idea how typical this is!

[sidra1968 in reply to BladesLover]

That is a really fast taper, so don't fret if you end up having to go back up.

[PMRpro Ambassador in reply to BladesLover]

That taper may work if you are on Actemra, which you are. However, only for half of patients, There are 3 different potential mechanisms for creating the inflammation in GCA and Actemra only works for one of them. If your GCA has one or both of the other 2, then there will be some inflammation that requires pred to manage the inflammation and in the clinical trials it was seen that that is the case for half of patients and they start to notice a return of symptoms at about 8-10mg pred. Furthermore - in the UK you usually only get a year of Actemra and it is very unlikely that GCA will have gone into remission in that time. So within a few months at most symptoms will reappear.

The fact that your blood markers have fallen to low levels doesn't mean the GCA is in remission - it is because of the way Actemra works. It is very clear from the clinical trials that this is the case - but as far as I can tell, very few rheumies have read the documentation.

[Dance62]

That's a pretty quick taper! I'm dropping by 1mg every 28 days and I'm told that's quick.

I think how you're feeling might be a combination of all those things. I've had phases where I've felt absolutely dreadful but my blood tests show everything's fine! No idea what's going on really.

[BladesLover in reply to Dance62]

No, I haven't either really! 🤦‍♂️

Dorset Lady made the same point about the tapering. I'll add it to the list of things to raise with consultant tomorrow!

[DorsetLady PMRGCAuk volunteer in reply to BladesLover]

Should Rheumy query tapering - it can be found in this document - under General Principles- it’s quite detailed which is why I didn’t attach it before -

academic.oup.com/rheumatolo...