Steroid side effects

feeling a little discouraged today. After 10 months of tapering tanking and going back to 60 mg and tapering we thought we had my ITP manageable and if I took 20 mg I would slowly build up my platelet count. but the last two weeks I've dropped and so tomorrow I'm meeting with my doc and we are talking about trying Romiplspim or N-Plate. Anyone heard anything about these?

Nplate is the trade name of romiplostim so it's the same thing. It works for about 80% plus of people using it and is very effective. Aim is to maintain a count of around 50 and not to get a normal count. Some, more and more it seems, are being pushed into remission by it and are able to stop treatment after some time. I would definitely get off the steroids and on to something else as steroids will cause permanent damage eventually. By the way don't be discouraged, steroids very rarely work to get a remission so it's not surprising and doesn't mean that Nplate won't work.

Which country are you in? Some countries allow self-injecting at home and some don't.

In my opinion, steriods are a waste of time and should be used as a rescue not as a treatment. They do not cause remission and make us feel horrible and hopeless. Six months of the dramatic ups and downs of doses and platelet counts. Yuck. Four days on promacta and things have been much better. Do not give up hope, move on to an actual treatment like N Plate. Good luck.

Well said Emily

Risk of severe infection from using corticsteroids:

Corticosteroid Risk Function of Severe Infection in Primary Immune Thrombocytopenia Adults.
A Nationwide Nested Case-Control Study
Guillaume Moulis , Aurore Palmaro, Laurent Sailler, Maryse Lapeyre-Mestre
Published: November 11, 2015DOI: 10.1371/journal.pone.0142217
journals.plos.org/plosone/article?id=10.1371/journal.pone.0142217

Abstract

Corticosteroid (CS)-related infection risk in immune thrombocytopenia (ITP) is unknown. The aim of this study was to assess the adjusted CS risk function of severe infection in persistent or chronic primary ITP adults. We designed a nested case-control study in the FAITH cohort. This cohort is built through the French national health insurance database named SNIIRAM and includes all treated incident persistent or chronic primary ITP adults in France (ENCePP n°4574). Patients who entered the FAITH cohort between 2009 and 2012 were eligible (n = 1805). Cases were patients with infection as primary diagnosis code during hospitalization. Index date was the date of first hospitalization for infection. A 2:1 matching was performed on age and entry date in the cohort. Various CS exposure time-windows were defined: current user, exposure during the 1/3/6 months preceding index date and from the entry date. CS doses were converted in prednisone equivalent (PEQ). The cumulative CS doses were averaged in each time-window to obtain daily PEQ dosages. Each CS exposure definition was assessed using multivariate conditional regression models. During the study period, 161 cases (9 opportunistic) occurred. The model with the best goodness of fit was CS exposure during the month before the index date (OR: 2.48, 95% CI: 1.61–3.83). The dose-effect relation showed that the risk existed from averaged daily doses ≥5 mg PEQ (vs. <5 mg: 2.09, 95% CI: 1.17–3.71). The risk of infection was mainly supported by current or recent exposure to CS, even with low doses.

...

Conclusions

This study suggests that corticosteroids were the main immunosuppressant associated with severe infection in primary ITP adults exposed to persistent treatment. Maintaining corticosteroid even at a supra-physiological dose is associated with severe infection. In contrast, the past cumulative dose does not seem to play a major role. These results sustain the use of corticosteroid-sparing agents in persistent or chronic ITP.