Journey update: LVV/GCA, tocilizumab and exercise

[DeepThought2]

I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller.

I have neither signs of pain nor of generalized symptoms such as fatigue or flu-like feeling (which were the main issues when everything started) and the side effects of pred (mainly sleeping issues) are more bearable now. With the lower dose of pred also the cholesterol values got back to the normal range again - so it looks like I am doing well with TCZ so far (all liver-related enzymes and leucocytes are within the normal range - and as expected with TCZ, CRP is at the detection limit and ESR is 4).

I started to work (home office) again since 2 weeks. That works pretty well as I have a university faculty position and lectures are online anyway. Moreover, 90% of staff is also working from home so we all communicate via Zoom and phone.

I also started to exercise carefully again and now manage to walk approx. 10,000 steps a day and I do regular cycling (up to 35 min, 170 watts, on a stationary bike - we still have snow around here in the Black Forest so outside cycling is not that easy) or running (up to 20 min on a treadmill). I monitor heart rate and always stay in the aerobic range and balance rest and activity. I feel really good with this degree of exercise (no sore muscles) - physically and mentally and try to slowly slowly increase. I keep you updated and I hope that I continue to make progress.

[Coffeebeans]

Sounds like you have managed to find a good balance. I wish you continued good progress!

[DeepThought2 in reply to Coffeebeans]

Thanks a lot Coffeebeans!

[HeronNS]

Very interesting and I hope you continue your recovery successfully. Did you start TCZ right from the beginning, with the pred?

[DeepThought2 in reply to HeronNS]

Dear HeronNS. Yes I did start immediately with TCZ (three days after the first pred dose). I now learned that this seems to be the standard procedure for GCA in Germany, where I live. So different from UK it can be used without restrictions (i.e not only for refractory disease) and there is also no time limit.

[HeronNS in reply to DeepThought2]

It does sound like best practice for using TCZ in these cases. Thanks for sharing your story.

[alvertta]

Wow. Fabulous progress. All the best.

[DeepThought2 in reply to alvertta]

Thanks a lot alvertta.

[alvertta in reply to DeepThought2]

What is LVV?

[PMRpro Ambassador in reply to alvertta]

Large Vessel Vasculitis - when the large arteries in the trunk are affected, like the aorta and then the branches off it to the neck, arms and legs.

[alvertta in reply to PMRpro]

Thanks.

[Devoid]

I am just so thrilled for you, I have improved so much with tocilizumab and very much feel that I would have benefited from it from diagnosis, feeling well and exercising helps so much in the recovery process, all the best to you 😊

[DeepThought2]

Dear Devoid, thank you so much for your reply. Good to hear that you are doing good with TCZ and all the best.

[DeepThought2]

Dear DadCue, thanks for your reply. It is my hope that I can rapidly taper to avoid the pred side effects (always hoping that I can cope with TCZ). When you tapered down within 7 months how did you then cope with adrenal insufficiency? Was it no problem then?

[Hidden]

This is very interesting, I am now down to 3.5 pred after 2.5 years. I feel awful though the aches and pains and stiffness could be rhuematism or age related, I'm 77. I am really tired all the time and could sleep for England, have been debating as to whether to increase the pred for a better quality of life or stick it out in the hope my adrenal glands wake up.

[PMRpro Ambassador in reply to Hidden]

If it were me I'd add a bit - as long as it is under 5mg it is low enough to prod adrenal function. And if the aches and pains could be PMR-related, you have overshot the dose you need anyway. Two and half years is very early days ...

[Hidden in reply to PMRpro]

Thanks, I'm sure you are right but I'm going to give the lower dose longer, I'm finding that paracetamol helps which makes me think it's mainly age related.

[PMRpro Ambassador in reply to Hidden]

I wasn't really meaning the PMR - I meant the fatigue and sleeping. The PMR was secondary.

[DeepThought2]

Dear ChrisMcT, thanks for your reply and sorry to hear about your pain and tiredness. Was that better when you were on higher pred doses?

[Hidden in reply to DeepThought2]

I wasn't so tired on a higher dose but still had bursitis in both knees, lumbago, stiff neck, rhuematism in my hands and something funny going on with my left foot. The rheumatologist said it will all go away once I'm off pred! Personally I think these things were caused by pred as before PMR I only had arthritic thumbs!

[PMRpro Ambassador in reply to Hidden]

I had all those with PMR - went away with pred!

[Viv54]

Brilliant !

[AncientMariner]

Thankyou for provoking an interesting discussion around your recovery which I have to say is a good story to hear. So often diagnosis is inconclusive and sufferers do find they are operating in something of a fog of symptoms that overlap and could have different sources. I am now reducing for the second time down from 60mg and am currently at 15mg but have noticed a return of fatigue and emerging irritating sources of discomfort in the left shoulder and sides of the tongue. This time I am supported by Tocilizumab as well so am hoping for amore successful outcome. Through such discussions I am able to begin to differentiate between what is GCA and what could well be Adrenal issues. I am to remain on 15mg for 4 weeks till any further reduction so I will give things a chance to settle down.

[DeepThought2 in reply to AncientMariner]

Dear AM, thank you so much for your response. I think I can feel really lucky to do quite well five weeks after diagnosis (which is also still a working hypothesis of my rheumatologist) but I am also aware that the road might get bumpier on the way. I just try to stay optimistic. I hope you will be successful tapering down the pred with the help of TCZ. All the best.

[springeramber]

hello I was very interested in your story as I have just been in hospital having a CT scan and after 2+ years going up and down with prednisolone I have a definite diagnosis of LVV and have my plan to reduce to zero !! by next january with the aid of tocilizumab which I will start as soon as all the bloods have been checked - I am so relieved as I have been feeling dreadful since being on methotrexate and reducing down to 6mg - I have been silent on this site as I could not even get my thoughts together! I will report back at the end of the year - I hope the rest of your journey goes smoothly DeepThought2 xx

[DeepThought2 in reply to springeramber]

Thanks a lot springamber. I hope that TCZ will help you to taper pred and that your plan will be successful. All the best.

[SheffieldJane]

What a perfect story. It has given me hope that Tocilizumab maybe doing more than I give it credit for. I am on 10 mgs of Pred. weekly Toc injections with a diagnosis of PMR (5 years) and GCA, LVV almost a year. My overwhelming fatigue is the symptom that holds me back.

[DeepThought2 in reply to SheffieldJane]

Dear Sheffield Jane, thank you so much for your reply. For me I believe TCZ is really helpful at the moment and I hope it will continue to be. Fatigue was one of my main symptoms before treatment but it now got much better. Was yours better with higher pred doses or is it unrelated to medication? All the best.

[SheffieldJane in reply to DeepThought2]

I struggled with fatigue before diagnosis. I think the causes are mixed, long term Pred and a relatively recent LVV/GCA diagnosis. I am a bit stuck recognising symptoms and adjusting treatment at the moment. I maybe taking unnecessary Pred (10 mgs). A kind of security blanket maybe. It worked very well for me with PMR.

[baxternoni]

I have been on TCZ over a year and I have been doing well. My dose was reduced to two shots per month due to low white blood count. I have been getting blood work every month because I was tapering off prednisone. Just wanted to let you know that that is a side effect of TCZ. My numbers are WBC going up again with the change. Glad you are also doing well!

[DeepThought2 in reply to baxternoni]

Dear Baxternoni, thanks a lot. I get blood work done every three to four weeks to check liver related enzymes and WBC. How long are you off pred now and is there a plan to taper TCZ over time?

[baxternoni in reply to DeepThought2]

I have been off prednisone for about two months. I might be on TCZ possibly another year or longer depending how I am doing. My doctor’s patients that have GCA as I do are all off drugs and doing well. Because I multiple illnesses related to inflammation, it is sometimes hard to to determine what’s wrong with me.

[DeepThought2 in reply to baxternoni]

I wish you all the best

[baxternoni in reply to DeepThought2]

Same to you! This is an interesting trip. After being sick for two years, I found out by accident that my subclavian arteries were blocked. One occluded after a week.

[DeepThought2 in reply to baxternoni]

It is really promising to hear that the outcome of the patients treated by your doctor is so good. In the PET/CT scan there was also some enrichment of the radioactive glucose in my subclavian arteries but nothing was seen in the MRI/MRA - so inflammation might have been not that intensive.