Would love some advice

[Sophiestree]

Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc.

I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone after 4 weeks to 30mg for 2 weeks and then 25mg for a further 2 weeks. We spoke on the phone and I told her that I had symptoms return almost immediately on the reduction and that now they were pretty bad, but without the fevers which I had pre diagnosis. She said that she did not understand as my ESR and CRP were all good. She told me to up the dose to 40mg and would ring in a week. That was last Friday and she didn't ring. I wasn't that surprised to be honest, as I am not sure how I feel about her still. I contacted the Rheumatology nurse on Monday to say that I did not get my phone call and that I also only had enough medication for this week and would need a further prescription which I have to collect from the hospital. They said they would pass it on and she would ring me. Nothing. So yesterday I emailed the nurses and the consultant did finally ring. She was still puzzled as to why my symptoms are back and asked me if I wanted to try Tocilizumab. She said it would take at least 5 weeks as it has to go to a panel. In the meantime she suggested I took a lower dose as it doesn't seem to be making any difference? I questioned it and she said if I wanted I could continue with the 40mg for a week and then reduce. Would love any suggestions as to what that should be as she clearly has left it in my hands. She will ring in January. In the meantime I need to have bloods done for the request for Tocilizumab and said she would only ring if the results had increased.

I don't seem to be able to write a short message do I... so sorry about that, but hope I have made some sense. My symptoms are not as bad as they were, but it has taken about 12 days on the higher dose. They are milder and mainly pressure in my head, pain in neck and back/shoulder blades. These were all the very first symptoms I had way back in July before I was even being investigated, so obviously I understand what they are now, which I guess is a good thing.

Thank you so much in advance. You are all amazing.

[podo]

Hi Sophiestree, Welcome to the site, I'm sure that you will receive the help that you need here. The experts will be along soon who can advise you better than me but Best Wishes

[Sophiestree in reply to podo]

thank you

[PMRpro Ambassador]

She obviously hasn't got a clue about GCA! She shouldn't be REDUCING the dose, she should be adding a bit more. As I think we said before, the chances of her getting you on to TCZ at this stage after 6 months is small. And to just leave you like this is totally unacceptable especially as xmas and NY will make getting help for the next 3 weeks next to impossible.In some people the ESR/CRP just don't rise while they are on pred or they lag a long way behind. Then symptoms rule. 40mg is absolutely the bottom end of the range for GCA and when reductions are forced as yours was it is often more difficult to get the symptoms under control again.

Have I asked where you are? Is there a large hospital with a rheumatology department other than where she works? Or an emergency eye clinic?

[Sophiestree in reply to PMRpro]

haha, I know, it's so annoying as I am under 4 different consultants because of this (LVV) due to it affecting other organs and they are all wonderful and on the ball, the one I really need to be like that is hopeless, I have no faith in her whatsoever and feel every time we speak I have to play the game with her to try and get what I need. Interesting what you say about Tocilizumab as she was literally asking me if I wanted it? like I know anything after such a recent diagnosis. I only know what I have learnt on here. I did try to say that from what I understood blood markers for CRP and ESR would not necessarily elevate after starting the pred. Her answer is that clearly the pred is not working... sigh.I live in East London and so am under Whipps Cross Hospital. There are a few Rheumatologists I think, plus an Eye A&E which I attended as soon as my diagnosis was made after the PET scan to determine whether I should be taking 60mg or 40mg after the 3 days on 1gm drip. I will definitely continue with 40mg for now. Thank you so much for the reply. I shake my head in disbelief and then relief that I have found this site.

[PMRpro Ambassador in reply to Sophiestree]

It isn't working as well as it should because she isn't using enough. It is hardly rocket science! If they use the 3-day pulse therapy then usually the drop is to 60mg, sometimes 80mg, The infusion all gets into the system, once you are on oral pred it depends on the patient, some absorb as little as 50% and so they obviously need a higher dose to get enough.

I suppose it is possible that she may get the TCZ because it is an LVV diagnosis. Can none of the other doctors pitch in?

Just looked it up:

uptodate.com/contents/treat...

says "Threatened or established visual loss at diagnosis – If there is a strong suspicion of GCA as the cause of visual symptoms or signs, we suggest the use of intravenous "pulses" of methylprednisolone, customarily administered as 500 to 1000 mg intravenously each day for three days, followed by oral therapy with prednisone 1 mg/kg/day (maximum of 60 mg/day), as recommended above for uncomplicated GCA. Patients with presumed or proven GCA and incident diplopia should also be treated with an initial intravenous pulse of high-dose glucocorticoids."

I really can't imagine you only weigh 40kg????

[Sophiestree in reply to PMRpro]

haha 40kg, I wish, more like 65kg!!Sadly, due to the osteoporosis, shrinking, and muscle loss from months of being ill, that 65kg is more fat that muscle!

I think they have all walked away now that the diagnosis has been given and they tend to say it is not their department when I ask...

The emergency eye clinic checked my eyes after my first drip and said that he couldn't' see anything. My sight at the moment is intermittent, some days it is blurry, others not so bad. But certainly changed. I am booking a regular eye check though to see what they say, and think I will do this regularly while I am so early on in all of this.

[PMRpro Ambassador in reply to Sophiestree]

That could be due to the pred - it can cause blurred vision and more. Have you spoken to your GP? It might be worth showing them the link I gave you - they may be prepared to give you more pred so you aren't scraping the barrel for supplies.

[Sophiestree in reply to PMRpro]

I am just ploughing through that link, I will definitely speak to my GP when I can as she is pretty receptive to things and every time I write to her she always rings me. Thank you for that. The sight thing is annoying as there is no point in getting glasses when it seems to change daily. Yesterday was fine, today is rubbish...

[PMRpro Ambassador in reply to Sophiestree]

I - and a few others - didn't spend a fortune on new specs, I moved my existing ones up and down my nose as required! I also got the cheapest frames and lenses when it was unavoidable.

[Sophiestree in reply to PMRpro]

Yes, I really don't want to shell out any more on glasses than end up being no use. I think it is more my middle distance that I am struggling with as cheap glasses for close work seem to work usually, and my regular glasses are fine for distance. Something like now, typing on the laptop is my problem and reading my phone etc.

[PMRpro Ambassador in reply to Sophiestree]

Yes - that was a problem for me but I did already have a pair, it wasn't a pred problem though may well have been a PMR problem. You might get a pair of cheap ones that work too - there is a way of working out the sort of correction you need for mid-distance which is between reading and distance. The cheapest lenses - don't need any fancy coatings and an old set of frames wouldn't break the bank.

[Sophiestree in reply to PMRpro]

Yes, I just need to get an optician's appt. They cancelled as the receptionist has had to self isolate... so I am not sure when that will be. I am just squinting a lot at the moment!! I will look a sight with three hanging from my neck!

[PMRpro Ambassador in reply to Sophiestree]

You could try taking the phone with you and trying different strengths???? Would a "Boots" vision unit let you look at your laptop while trying on?

[Sophiestree in reply to PMRpro]

I don't know if that works as it's distance rather than near sighted. Hence needing a prescription.

[PMRpro Ambassador in reply to Sophiestree]

It is all correction - I use my computer specs to be able to read a bit further away - I'm very short sighted and don't need specs to read if I hold it close enough but can read it with the computer specs so they serve 2 purposes.

[DorsetLady PMRGCAuk volunteer]

Oh dear, another Rheumy who doesn't “get”that symptoms overrule blood markers once on Pred. As you realised initial tapering plan was too fast - probably taken from guidelines ....but she obviously didn't read the bit about taking account of a. patients wishes, and b. return of symptoms.

Provided you have enough tablets stay on 40mg for at least another 2 weeks, hopefully that will mop up additional inflammation that’s resurfaced.

Then, as and when you reduce, try 5mg only to 35mg - 4 weeks, then 5mg again. But only if no return of symptoms.......

....as for TCZ , if she gives the Pred chance to work it may not be needed...but it’s your choice.

As PMRpro says, any issues, A&E

[Sophiestree in reply to DorsetLady]

Yes, sadly, and I could almost hear you when she was talking to me sighing.... she is leaving me a months supply to pick up from the hospital at 40mg so I can definitely go for another two weeks of 40mg and try and reduce to 35mg until she rings in January, although I don't know when that is as she didn't say, so I won't be surprised if she has forgotten to put that in the system anyway. At least I now know if you email the nurses they do forward the email. You really have to be on your mettle with all of this, otherwise I dread to think what might happen. Thank you for the advice, I will definitely follow that line.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

Ha,ha - I do have that effect... I get in your head...and you can't get me out.. in a nice way I hope 😉

[Sophiestree in reply to DorsetLady]

I love it, you are all over it, and I am truly grateful for that. Please don't stop...

[Frewen1 in reply to DorsetLady]

Hi, DorsetLady and PMR Pro (and Sophiestree)... could I please pick up on something you just said here - that it's not the markers that should be referenced, but symptoms? I have come down to 15mg since August, when I started on 60mg (after a week hospitalised on intravenous drip) - and due to go to 12.5 tomorrow. Than after 10mg, 1mg a month and so on--- but this is planned by the Rheumy precisely because the markers are currently low (I'm GCA, not PMR). If the markers go up, she'd alter the drug level accordingly. However, I've noticed that the fuzzy/buzzy wired sensation I have all the time (and weak limbs, and so on) seems to be getting worse, rather than better. Is this because the dose is decreasing? Are these symptoms not the Pred, but the GCA itself? I should know the answer to this, but I don't, I feel an idiot! (The overflow leaking is just as bad by the way, and I haven't had any contact from the referral process yet...) Totally agree with Sophiestree, this forum is a revelation. x

[PMRpro Ambassador in reply to Frewen1]

The blood markers often lag behind reaching a dose of pred that is too low to fully control the inflammation each day so even if their markers were raised at diagnosis (they are not in up to 20% of patients) they don't start to appear again until the inflammation is well established - enough inflammation has to be present for long enough for the liver to react and produce the proteins in the acute reponse. There are articles in the medical literature that say that symptoms should override blood markers - a lot of doctors either don't know or think they know better. Once there is a bit of leftover inflammation each day it builds up over time - like a dripping tap eventually fills a bucket and it overflows.

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Agree with PMRpro - and as we all know blood markers can be raised for a variety of reasons - for example mine have gone high on 2 separate occasions -once whilst I still had GCA but no flare, no symptoms but did have stress over late hubby’s state of health, And secondly a few months after 2 replacement joint surgeries (within 6 months) and a 36hr flu type virus - well after GCA in remission.

Blood markers can be useful regarding diagnosis, but after that should be used in conjunction with stood lack of them - not as a stand alone reason to increase/decrease steroids.

[Frewen1 in reply to DorsetLady]

Thank you

[Kafkaontheshore]

Hi there. Sorry to hear your GCA news. I am fairly recently diagnosed too (September) with the large vessel vasculitis type rather than head/eyes. You are so right in that you have to be a good proactive self manager. I have been in regular contact with my rheumatology team including the secretary who passes messages on. Like you I don’t always feel the rheumatologist gets me and my experiences of GCA. I have pushed for treatment as I have felt so awful and have been unable to work (planning to go back in New Year). I asked for and got put on Methotrexate early on to try and enable me to reduce prednisolone dose more quickly. If I have a further flare the plan is referral for Tocilizumab which looks like it has good outcomes for GCA. All the very best to you and keep on contacting and pushing to ensure you get the best care. People don’t get how Ill you can feel - keep at em !! 🤪

[Sophiestree in reply to Kafkaontheshore]

I have just read your synopsis, sounds like you had a rough ride there..I hate the fact you have to be so on it, as there are clearly many in the medical field who are nowhere near informed enough of what happens or the symptoms. And what I hate even more, is having to play the game to try and get them to think it was their idea!

[Kafkaontheshore in reply to Sophiestree]

Yes I think it is a case of spelling out to professionals exactly how awful you feel, what symptoms you have and being quite assertive. Although 60 I was pretty fit and active and I tell them this and the big change now. I reckon at my worse in September/October I was at about 20% of my normal level of functioning. I’m at about 70% now I think. I have learnt on here and by reading academic articles that GCA is a very serious disease and we have to strive to give ourselves the best possible outcomes. It is hard to push at professionals but we have to do it.

Sorry to go on but you/we all deserve the best chance of a positive outcome 🤪😀

[Lonsdalelass in reply to Sophiestree]

Yes, have to agree with your last comment about playing the game so they think it was their idea... Reminds me of when a trainee doctor who I saw initially before my diagnosis, was simply referring me for some physio until I asked for bloods in case it might be rheumatics (my 80yr old mother put me on to that after she had RA for a while in her 50s) and the trainee doctor looked surprised but took the bloods anyway, then she was given the praise from her senior doctor for suspecting PMR! 🤣

[Sophiestree in reply to Lonsdalelass]

Classic. I am a bit tired of playing this game to be fair, but totally understand that I have to. I love it when I meet a consultant who is open to listening to me, and also has empathy, sadly the one I needed most importantly, the Rheumatologist, is hopeless and doesn't even read my notes. When she queried my symptoms had come back due to normal bloods she asked how it was when I touched my head. I told her that had never been a problem, hence why I did not tick the usual boxes and so it took months to diagnose. It's a full time job sometimes.

[PMRpro Ambassador in reply to Sophiestree]

I suppose being married gives us practice too ...

[Sophiestree in reply to PMRpro]

Ha!

[Frewen1 in reply to Kafkaontheshore]

Thank you! yes, I try to do bits of work (at home, obviously), walk, do some exercise and so on... otherwise one just thinks one will become comatose! Not allowed the TCZ as I don't qualify - Pred has to "not work" for me to be offered it, and I gather there is mixed opinion...

[Sophiestree in reply to Frewen1]

I haven't been able to work for months, but like you, am hoping to start slowly in the New Year, albeit I am self employed so depends who contacts me. I will be interested to hear about my TCZ panel discussion. I did feel she suggested rather early. I won't be massively surprised if I don't get it either.

[tangocharlie]

I'm currently on 40 due to a relapse of PMR and my rheumatologist, who is widely acknowledged to be one of the world experts on PMR, says to reduce cautiously by no more than 2.5 a week

[Sophiestree in reply to tangocharlie]

Interesting isn't it... I feel she just left me to it as she wanted to get off the phone.If it wasn't for this forum when she was talking to me, I think I would be a terrible state right now. But felt OK as I knew I would get amazing guidance and advice here.

[tangocharlie in reply to Sophiestree]

Same for all of us, it's often our mission to educate the doctors who are supposed to be helping us!

[Sophiestree in reply to tangocharlie]

And I thank you all immensely for your amazing knowledge...

[Frewen1 in reply to Sophiestree]

xx