Decided to not have anymore treatment

[Sachmo16]

Has anyone decided to stop all treatment?? I have had ITP for 10 years. It took a while to find something that worked and tried a few treatments before I went on the Fostamatinib trail. Side effects were awful but stuck with it and platelets held around 60-80. Was then taken off it during Covid and started on rompilostin- this worked too but started to get awful swelling and my pain in my joints - was put on hydroxchloriquine. Had opportunity to go back on fostamatinib so did - side effects were awful again and couldn’t carry on so took myself off it. Any way long and short of it my platelets have held since August and have been in the 35-58 range. They would normally crash to low teens before rompiplostin but am not bruising or bleeding and my consultant is happy as long as they are over 30 I need no treatment I feel better than I have in years - I sure not being on any drug is helping more - no awful side effects and yes I still have low platelets but quality of life is so much better and as long as I am sensible then fingers crossed I can be off medication.

[Daniel87]

Yeah, me, I decided that 5-6 years ago when I still had very low platelets, around 0-10, I just had enough of various treaments that were only temporary solution with bad side effects. After 18 month from that day my platelets went back to fully normal and now are around 300. Today I am happy that I decided to do it although it is worth to mention that it was very tough period for me not knowing what every day brings.

[janran in reply to Daniel87]

Hi Daniel

I am just about to try and make the same decision as you as to whether to stop all treatment and live with a low count. I think I will also find it tough to live with the worry of a bleed. Did you have any significant bleeding symptoms when your count was still low? I would be happy to live with a low count as I only get symptoms below 10 but the count has been in single figures for a while and is showing no signs of improving. This feels like more of a risk.

[Daniel87 in reply to janran]

Hello Janran, this is somewhat radical decision, atleast from modern medicine point of view, but I have not regret it fortunately. I decided to stop all treatments after taking nplate injections for a month and then eltrombopag tablets Revolade also for a month which crashed my platelet count from 5-10 to round 0 which caused bleeding from my gums. I was waking up every morning with a bloody pillow for a few first months. I know it sounds scary but I get used to it after a while. Apart from that i didnt have any other problems and fortunately my platelet count recovered to normal after year- year and a half.

[janran in reply to Daniel87]

It sounds like we are similar as regards bleeding. My lowest count was 1 last week and at that level I had bleeding gums and big blood blisters. Nothing quite as dramatic as you describe but scary nevertheless when you’ve never really had any bleeding over 12 years with ITP. With my level of bleeding, my doctors are actually suggesting doing nothing as a completely valid option and apparently have a few patients already doing this. When I was first diagnosed the treatment was much more heavy handed and I was lucky to manage to keep hold of my spleen. There was much more alarm about a count of under 50 and under 10 would have meant a hospital stay. Things do seem to be moving towards less invasive treatments.

Thank you so much for replying to me so quickly and I think I may just delay the decision for a bit. Try doing nothing and see if I can hold my nerve. With luck the count may even improve. I hope you continue to have the great count!!

[owenm]

Hi Sachmo16,

I’m a 40 something Male, diagnosed with ITP 14 years ago

Last treatment somewhere about 8/9 years ago.

Treated with, steroids, iViG, Anti-D and Rituximab during that time.

No durable response to any treatments and the steroids were bad for my general well-being.

Long story short, there were differing opinion's in my consulting team about splenectomy, and was refused any more ‘modern treatments‘ until splenectomy was performed, went for the scan but I decided against surgery.

Towards the end my treatments were only when my count dropped below 30.

Count remains low but stable (30-40) as opposed to the rollercoaster of elevate and crash whilst on treatments.

I know my count goes up and down as I can track cuts and grazes forming a scab or not, suffer badly with fatigue and I do consider a lift with a short course of treatment during the winter.

This has been suggested by my new consultant (have moved across the border into Ireland from Northern Ireland) they have also said that I would have access to some of the newer treatments now available, but I haven’t availed of yet.

I have bloods once a year and a telephone conversation with someone on the team.

I now work in a risky line of work, doing physical labour as well as working with knives, hand and power tools and where slips trips and falls are a major hazard.

Still standing regardless of some of the madness I put myself through!

Definitely not wrapped in cotton wool.

Hope you’re living your best life

Owen

[holcotts]

Thank you for this thread Sachmoi am.considering coming off treatment I have had ITP for 15 years and have had no treatment for periods resorting to steroids for crashes. At start of Covid went for Romiplostin because of immune system and am still on it.

Not sure of sude effects but platelets havent dropped below 30 in almost 4 years. . Also menopausal and time of lifey so hard to tell whats what side effects wise.

Very interested in seeing what woukd hapoen if I came off Romiplostin knowing i zm responsive so presumably would be again? Or the seasonal approach outlined by owen...

Interesting.. !

[Sachmo16 in reply to holcotts]

My consultant has said that many patients who have come off romilplostin have had good results with platelets remaining at a safe level - I am not sure if my joint issue was due to medication but I’m definitely feeling much better not being on anything and going to try and stay off any medication for as long as I can. I am still tired etc but I think that’s part of having an auto immune condition. Before I would have been very worried about having platelets under 50 but I am so aware now of how I feel if they are very low and know that if I need to inject rompilostin to get them higher I can.

[Thrombosucks]

i have refused any pharmaceutical treatment. Platelets fluctuate between 120 to 22 and everything in between. We monitor numbers and watch for bruising and bleeding. It would have to become under 20 for me to take action.

[bellumbus]

good for you! i also stopped all medications because they all stopped working and all i was getting was the side effects. i've discovered that you can live a healthy and fulfilled life with low platelets by paying attention to things like diet, sleep, stress management etc. my count was in the single digits when i went all in with lifestyle changes and last time i checked it was at 26! and yes that is still low, but everyone is different, and for me that might just be good enough.

[JigSaw63]

Hi Sachmo16, I'm taking both Fostimatinib and Avatrombopag and, thankfully, do not have any serious side effects. My last platelet count was 61 but it does fluctuate. Interesting to see that your stable when not taking any medication. Are you monitored regularly? I think a lot of us would like to be medication free but feel it's risky.

[Sachmo16 in reply to JigSaw63]

Hi - yes I was monitored every 2 weeks but this has now be changed to every 6 weeks as my platelets are holding - normally between 35 and 55 but have not gone below 30 which is the lowest they want them to go with no medication. I don’t to be honest think about it much anymore - I feel taking no medication is definitely the right thing for me - I’m not 100% sure but my joint and connective tissue issue has not flared up again and im generally feeling well so am hoping this continues long term.

[JigSaw63 in reply to Sachmo16]

That's excellent news for you. I would be concerned that if I said I didn't want to take medication anymore they would just wash their hands of me and I'd be back to square one if something happened. At the moment the Avatrombopag and Fostimatinib are working well for me with no real side effects. I think I'm very lucky in that respect. My platelets can fluctuate from 12 to 60+ so very erratic. This is something to bear in mind though if I have any problems. Good luck for the future and I hope you continue to be stable 😊

[Thrombosucks]

I refused any treatment from the start. My levels ranged from 22-65k and if they were really low we would retest a few days later to ensure they weren’t still trending down. I’m 2 yrs into it and I’m not bruising and the petichae is minimal.

[Poetsister]

Good for you, l do hope you continue with your good health and well done.

[Sachmo16 in reply to Poetsister]

thank you - yes I remain well and now have 3 monthly blood tests as my platelets are stable at around 58. It has been suggested now that my joint/connective tissue problems could well be drug induced….so hopefully I can also come off hydroxychlorequine at some stage soon now too and then I’ll be drug free.