Next line of treatment for chronic ITP - Revolade being considered. Sorry for long post.

[LynnCox]

I'm nearly 49 and was first diagnosed with ITP in summer 2014 following routine blood tests for my rheumatologist, which showed a platelet count below 20. I was referred to a haematologist and prescribed prednisolone and I responded well. Apart from going into withdrawal when I was weaned too quickly from the steroids, I coped and went back to living a normal life.

Nearly a year after diagnosis and just one or two appointments from being discharged, I relapsed and was put back on the steroids. As I reduced my steroid dose, azathioprine was introduced. Unfortunately that damaged my liver and was stopped. After getting off the steroids, my platelet count reduced so was put back on prednisolone for a third time, before I was finally weaned off them again in summer 2017.

As I was being weaned I started losing weight and since June 2017 have lost just over 2.5 stones doing Slimming World, which works for me. I finally got off the steroids again in August 2017 and was on a low dose of mycophenylate but still dealing with the side effects of coming off steroids (achy joints, particularly), when I had a routine appointment October with my haematologist to be told that platelet count had fallen again and I needed to go back on a low dose of steroids with an increased dose of mycophenylate.

I've now had two follow up appointments since being put back on steroids and am not responding very well. My rheumatologist has expressed concern about me being on steroids for all but about 10 months of the last four years, and the side effects for me are horrendous. I have managed to keep losing weight, but it's not easy.

At my recent appointment last week with the haematologist, he discussed putting me on Revolade and gave me a patient leaflet about it. He also introduced me to a key worker. I have read the leaflet several times. I already have cataracts developing and am treated for dry eyes, secondary to limited cutaneous systemic sclerosis (autoimmune). I also have autoimmune hypothyroidism, which having been stable on levothyroxine for the last six or seven years, has recently been shown to be under active so the thyroxine dose has been increased.

Other that what is in the patient leaflet, is there anything else I should know before starting Revolade?

Many thanks and regards

[BellaMo]

Hi, auto immune conditions do seem to come in groups don't they? I can relate to the horrible side effects of the steroids and sorry to hear you're experiencing this. I'm curious - have you had joint pain before the steroids? I started getting them while tapering and still haven't seen a rheumstologist..

Revolade worked for me and if it can get you off steroids it might be worth attempting. From 'online wisdom' in my community the side effects are dose related, and many people who find this effective don't need the highest dose so side effects are minimal. Need to keep an eye on eye and liver issues but many don't ever experience those. I will mention the only aim should probably be to get a count around 50k with minimal dosing so good luck in the balancing process!

You can't eat dairy or really just calcium rich foods 4 hours before or after, but again that's worth it if it gets you off the steroids. Also can't get pregnant or take a few medicines with it so worth verifying with your doctor in regard to anything else you may be taking. Good luck!

[prudencepayes]

I think BellaMo has just about summed up everything I would have said to you. After trying many different treatments and all of them failing, either immediatey or after quite a short time I was put on Revolade. It has been absolutely marvellous for me and I'm now on a relatively low dose and still getting very good platelet counts.

The dietary restrictions take a bit of getting used to but I take the pill at bedtime and on the rare occasion that I might have had some dairy in the evening I take the pill up to the bedroom and take it when I wake in the night.

I understand that success rates on this medication are close to 90% so I would say give it a go - you will be closely monitored, including your liver function. All the best with it !

[heather1966]

Has your doctor ever run a vitamin D test. My story quickly have had ITP for 20 years count 30 ish for 15 years I am a 50 female and blood work showed D deficiency started taking 1000ui daily and my numbers went up to 63 so I upped the dose to 2000ui the next blood draw they're up to 96. This has been the only change in my meds and my Doctor is thrilled but all she'll say is keep it up I think someone needs to research this.

[Kyriak51]

Hi Lynn my name is Georgia I was diagnosed with it last in early 1990s refused steroids due to side effects you have unfortunately experienced such as cataracts ,weight gain and effects of too rapid reduction of steroid doses. To save time you can read my response to Topography52 from kyriak51 detailing treatment journey. Revolade, a thrombopoietin which stimulates the bone marrow to produce platelets. This drug is well tolerated, starts with 50mg\day and titrated by 25-75mg to achieve platelets between 50k-200K. You can read the results results at novartis.com, the more you know about your disease the better the care you receive. At this point there is no cure for itp only management. I have been on Nplate (romiplostim) weekly injections to maintain my platelets between 50 to 80 thousands and I’m fine with that. When you get to the end of your rope, tie a knot and hange in there:)kyriak51