ACTEMRA Update

[shazstep]

I tried. Unfortunately it is not the answer for me. As I am writing this I am itching all over, no energy and coughing. My last blood test my ESR has gone up to 26. I think it has gone up more now the way I feel.

Is it possible to manage this disease without a rhumy? With all the information and knowledge here I feel between these pages and my gp (who I am happy with)I don't need a rhumy. It all seems trial and error.

I did have great hopes for the actemra, even though the cost would have left me with zilch money. It started off so good. Now the reaction is so bad and my numbers are increasing, what is the point?

I hope my side effects from prednisolone are not as bad as they were before being a lower dosage.

[PMRpro Ambassador]

Can you manage "this disease" without a rheumy? I suppose it depends. PMR definitely possible. GCA definitely not. In many countries you would have no access to Actemra WITHOUT a specialist input, it is not a drug for a GP to use.

But before using Actemra you do need to be pretty certain that it is PMR/GCA you are dealing with. There are other disorders that can mimic both and which would not respond to tocilizumab as it is the wrong antibody involved.

[shazstep in reply to PMRpro]

Hi, Both ophthalmologist and rheumitologist have said PMR/GCA. I intent to see my ophthalmogist as usual as it all started when I lost my sight for a short while. The biopsy showed no blood flowing through the artery at all.

Reading posts my treatment seems to have been so different from the majority. Before starting Actemra I went from 75mg to 5mg in 3 months. So many posts are on 10mg or more for a very long time.

Actemra did work wonderfully up until about 3 weeks ago when I first had a reaction. My numbers were the best they had ever been but not anymore.

[Soraya_PMR in reply to shazstep]

A sensible taper may be all you need!

[Hidden in reply to shazstep]

WOW!!!!! 75mg to 5mg in 3 months?????

[PMRpro Ambassador in reply to shazstep]

A patient with GCA needs to be on high dose pred for rather longer than that even with Actemra I'd have thought judging by the medical literature so to have taken you from 75mg to 5mg without Actemra when you have GCA seems bordering on medical negligence to me.

The Actemra is to be used over a period of about 6 months - or more - to reduce the pred dose from the usual starting dose to as low as possible. But even with Actemra the patient may not get off pred altogether and some need the Actemra for longer than others. Also the monthly infusions are not felt to be as effective in GCA as they are in RA.

[shazstep in reply to PMRpro]

You have really given me some things to think about. I have always up until now followed doctors orders especially if they are specialist. If it was not for this group I think I would have gone completely crazy.

Many thanks to everyone.

[Hidden]

Ohhhhhhh bummer, I am so sorry to hear this!!! *sigh*

I too have high hopes for ACTEMRA, if and when I am ever offered it and decide to take it. All BIG ifs, mind you.

It is something out there in the future, on which I like to hang a placeholder, thinking maybe, just maybe...

I'm sorry it did not work for you and pray that the Pred will get you back on the road to recovery!!!!

[shazstep in reply to Hidden]

Thanks for your reply. I hope I have not put you off trying Actemra. Just because it is not my answer it might be yours.

[Hidden in reply to shazstep]

No, not at all... I am on the fence about it really. I have struggled so much with the Pred, that I believe I'd be a good candidate for the Actemra... but if it came down to it, not sure how I'd decide. I wish it had worked better for you. : (

[PMR2011]

Shazstep, my eyes bugged out when you said you tapered from 75mg to 5 in 3 months! No wonder you feel crappy. Are you still taking prednisone at all? I am on Actemra (since January) weekly injections. About a month in I had some of the itching. Just as I thought to take Benadryl before my dose it stopped (not sure why). I make sure the medication is room temp, I inject very slowly and drink lots of water before and after. I am on 6mg of Pred along with the Actemra.

Hope with your decision to not take Actemra you are able to get on a sensible reduction plan!

[shazstep in reply to PMR2011]

I was put back on prednisolone 10mg by my gp. Had them about 5 or 6 hours ago and feeling better than I was. I have an appointment with gp to discuss where to from here. I want to do lots of research before then. As I read things on these posts I write down words or copy websites to be informed as possible.

I think I have lost faith in my rhuemy. I had the same symptoms about 3 weeks ago but not as severe. Injections were stopped for a couple of weeks. Had an injection last week and now feel dreadful. As my gp said I am "between a rock and a hard place" with the side effects I had from prednisolone. Even taking them for 2 weeks recently side effects started.

Where does one get a Magical Cure!!!!!! I am willing to pay.

[PMRpro Ambassador in reply to shazstep]

There isn't one - Actemra is probably the nearest. For most of us it is a case of a good rheumy and a sensible approach to the pred, looking to manage the side effects as best you can, which is possible for a lot of them.

Everyone has side effects at GCA doses. The point is that however horrid they are, none is as bad as the ultimate side effect of GCA which is blindness and as you reduce the pred dose they do improve. Unless the pred makes you mentally ill, which is a very rare effect, some of which can be managed medically. You may have a very unpleasant 6 months, even a year, on pred but it does get better.

[enan-illuc in reply to PMRpro]

Well said PMRpro,

My Rheumy (I think she is very good) said that Actemra does not replace Prednisone but helps lower the dose. I also have GCA/PMR and take one shot of Actemra every two weeks and have slowly dropped to 9mg of Prednisone. My Doctor stressed 'not to drop too fast and to take my time'.

I am no medical expert but I think time heals us and the Actemra and Prednisone only make the 'wait' a bit easier. Again, I am no expert.

[SnazzyD]

Is there a possibility that you have a chest infection from being immunosupressed which might explain the rising inflammatory marker?

[shazstep in reply to SnazzyD]

Hi, I had xrays done yesterday and all clear. My gp checked again today and said my lungs are clear. The results are from 30th March. I am open to any possibilities but I believe I would have had symptoms before last Friday if I had an infection.

Please if you have any more possibilities are am open to considering them.

Thanks for your input.

[HeronNS in reply to shazstep]

It seems logical that the simplest explanation is the most accurate - which is that a reduction within three months by a total of 70 mg (from 75 to 5) is the source of your current problems. If 10 mg is already helping you feel better I think you have your answer. You might in the end have to go up a little bit more, but as PMRpro says it won't be forever, and most side effects can be managed. What specific side effects does pred give you once your dose is down into the low levels PMR patients take, where you are today for example?

[shazstep in reply to HeronNS]

The high dosage gave me cataracts, uncontrollable glaucoma, diabetes, depression, weight gain. As the dose lowered the pressure in my eyes lowered, no more diabetes and depression eased. I was not on low doses long enough to notice much. My blood pressure has come down enough for my gp to stop 2 tablets I was on before I was first diagnosed. However it was up over 200 on Sunday night when I felt at my worst. It is back down again now. My blood tests showed improvement each month then when I started Actemra they were the best they had been.

I want to investigate the slow release tablets. I was taking my tablets in the morning as I am not a good sleeper, but would be willing to try taking them night time.

All this makes me wonder if I actually need rhuemy?????? It comes down to trial and error. There is so much advice from people like yourself, I feel as informed as rhuemy is.

[HeronNS in reply to shazstep]

Yes the high dosage can give unpleasant, to say the least, side effects. Glad the serious ones eased as your dose came down. I was only ever at 15 mg and my side effects included raised ocular pressure, high blood sugar and probably contributed to bone thinning. I imagine had I needed GCA doses I'd have been in much the position you were and feeling much the same way about devil pred!

[Orchid47]

My Rheumatalog wants me to have 3 vaccinations done before I may start Acterma.

Pneumonia, Herpes Zoster and Tuberculosis.

Acterma suppresses the immune system and may cause a lot of Infections and inflammations all over the body.

She told me to read surely about all the side effects. A patient of her, who is 50 years old,

got Pneumonia from Acterma and is now in hospital.

Some thing to think about.

Orchid47

[shazstep in reply to Orchid47]

The only vaccinations that were mentioned to me were Whooping cough and Tuberculosis, which I am up to date with. I am now learning to question the so called experts. I don't believe there has been enough studies of Actemra, however if we don't give it a go how will they ever gather information.

I wish you well.

[Jim-CJ]

Hi Shazstep,

My wife started Actemra the beginning of February. She started at 20 mg of Prednisone. She has GCA and is using a weekly injection as determined by the FDA. She will be at 13mg of Prednisone on Friday. This is lower than she has ever been (3+ years). She will drop 2 mg every three weeks until below 10.Then probably 1 mg/ 2-3 weeks. You have to go slow even with Actemra. She has had a little itching, but not severe enough to be concerned with. We are SOLD! on Actemra, but you have to use it wisely and taper slowly. My advise would be get back on it, but start at 20mg of prednisone, drop 2 1/2 every three to four weeks to10 and then go 1mg every 3-4 weeks. And weekly injections of Actemra. As a side note, my wife's CRP readings are now at 0.4.

[shazstep in reply to Jim-CJ]

Hi Jim, Thanks for your input. I was following doctors orders which seems to be way wrong. I have an appointment next week to discuss things with my gp on Monday then seeing rheumy on Thursday.

I am very pleased that your wife has found it so successful. Maybe if I can convince my rheumy to keep me on both Actemra and prednisolone I might be more successful. Once again thanks for the reply