Hello everyone! This is my 1st time posting on here, but I'm a frequent reader and I wanted some feedback from members who don't take medication.
I was diagnosed with ITP last year (2017) and doctors said it was caused my an auto-immune disease (Mixed Connective Tissue Disease) and was put on 60mg of prednisone - plus Plaquenil - I'm in CA so I'm not sure if the prescription names are the same. Everything was going well - platelets were increasing and my steroids were being tapered then this past June my platelets dropped all the way to 5 and I had to be hospitalized. I was given IVIG plus a platelet transfusion and then my prednisone was increased to 60mg and I started CellCept.
Well, this past August I caught a nasty infection that turned into sepsis and had to be hospitalized again and of course my platelets dropped, this time to 18. Currently I'm on 30mg of prednisone and Plaquenil - I've been told not take CellCept until my infection clears up (it's a nasty UTI - resistant to a lot of antibiotics) but I'm wondering if all these immuno-suppressor drugs are worth it. I don't get very many symptoms when I'm low - bruising and petechiae but only when I'm below 10.
I just wanted to know if anyone out there doesn't take medication and what your experience is like, for me it feels like my choices are: low platelets or lowered immune system - both of which may cause problems and now I'm wondering if it's worth it to stay on these drugs or just come off them already.
Thank you! I look forward to reading your responses : )
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Bueller
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I had the same issue when I was dignosed with ITP in 2014. I was put on steroids and my platelets went up initially but had a lot of side effects. My immune system was weak and I contracted infections like common cold and diahorrea due to which my platelets will drop. I decided to stop steroid and am taking naturopathy like papay leaf juice and noni fruit. My platelets are maintained above 20k and am having a Normal life
What is noni fruit? I,too, am taking papaya leaf juice with, I think, good effect. Bruises are lessening. The drugs (demimethesone a strong steroid) was brutal but did raise my platelets from about 22 to 220 — albeit briefly. I will use them only if I need surgery.
I've had ITP for 23 years,now, and don't have any meds, as I am asymptomatic also. My count is now about 38, and has been for about 3 years. It was 75 when first diagnosed!!
I have a yearly flu jab, but that's about it.
Life is normal, but I don't have as much energy as I used to, but you learn to live with it and pace yourself accordingly.
Hi Bueller, I concur with scaryteacher, I've had ITP since 2012, had a count of 47 at diagnosis, went down to 4 when I was put on prednisone for six months followed by a course of rituxamab. Count went up to 98 but has dropped ever since, now fluctuates between 22 and 48 currently 38. I don't take meds as I don't think the side effects are worth it, I get occasional bruising and have a lack of energy or fatigue but I've learned to manage it and take vitamin B supplements, magnesium and Zinc, and pace myself. If I need to rest I rest. Good luck with your journey.
Hi, I've had ITP for over 15 years and have no medication for it unless requiring minor ops. The only time I had prednisolone to boost platelets for an op it did the opposite and sent them down to 0 !! My counts range from 20 - 50 the last few years, no symptoms except the odd bruise. Yes there are days I am exhausted but it doesn't last too long. I am glad my hematologist advocates no medication as anytime i have had to take it in the past to temporarily boost the platelets for surgery it has caused more problems. I do take medication for BP tho.
Based on experience and as doctor's advice, i am stopping my medicines for ITP (Romiplastin) whenever I encountered some sickness (like asthma, heavy cough or heavy flu). ITP patients have low immune system than normal people, so it is easier for us to be sick. After 2-3 days and upon recoveey from sickness, my docs will tell me to continue with my ITP meds. Better to be safe (ie follow what your docs will say) than decide on your own (not to take meds).
Hi Bueller, when I was first diagnosed in 2007 , I was given blood and platelet transfusion, followed by IVIG. Then, they did a bone marrow test to determine its ITP. Once confirmed they put me on a prednisone course starting 60mg, gradually reducing to 1mg for one and half year. After the course ended and I was confirmed stable by my haematologist , I was discharged and no medication until my relapse in 2012. I was prescribed to prednisone again in lower doses gradually reducing to 1mg for a period of 6 months and I was stable again. Since then I haven’t had any medications, but since last July 2017 my count is up and down. I’ve heavy periods. My haematologist hasn’t prescribed any medication, we both agreed and of course they recommended to only treat me if it’s extremely serious when the count is below 20 and I’m showing signs of bruising and bleeding. So far nothing, but I’m making sure of a healthy diet and lifestyle where possible. Of course there’s side effect , i put on weight, 2 sizes bigger, it took me long time to get back in shape, my skin was spotty, but these side effects are temporary. In your case , your platelet is below 20, so medication would be crucial as you will be vulnerable to bruises and bleeding. And you must be careful to not get injured to prevent excessive bleeding. Once your count is stable and above 50, I’m sure your haematologist will propose less medication, however it’s impossible for me to say as each case is different. Adult chronic ITP varies, some have their counts drop every 5-10 year, some every month. So where possible eat healthy, cut down on alcohol and do some light exercise. There’s some many things out there to decrease platelet production but not many to increase. And stress and unhappiness to doesn’t help. So also focus on a happy mindset . Take care
I have had ITP for at least 10 years. The hematology workup showed it was due to my autoimmune disease of lupus. The lowest count I have ever had was 37. No medication was ever given b/c I refused. Rituximab was recommended by my rheumatologist if I went below 30. That never happened. My last count 4 months ago was 104,000 which is great for me. The only thing that has changed is that I started taking melatonin to help me sleep at time. I am also on Cellcept and 4 months ago it was increased from 1000 mg/day to 1500/day, but that was not for platelets. It was b/c my inflammatory markers had gone up. I am also on methylprednisolone 4 mg daily. My Plaquenil was decreased from 400 mg/day to 300 mg/day.
I am worried about the increased CellCept making me more susceptible to infections. I have worked from home during this time so as to not get every illness that comes along working in an office.
My recommendation is make sure you get a flu shot including Pneumovax. Also, carry antibacterial gel or tissues with you at all times after going out in public. Keep your hands away from your face. Last but not least, I stay out of grocery stores during flu season. I either have someone get me what I need, or our grocery stores in this area deliver. I don't eat out at restaurants either during flu season.
To answer whether the immunosuppressive therapy is worth the risk, that depends on how you feel physically while taking it. If you feel better, then that is a better quality of life. I don't really have a choice. If I don't take it my lupus rages and attacks my organs. Discuss it with your doctor and have your doctor help you weigh the pros/cons.
I did all the treatments IVIG, Platlet transfusion, steroids for 7 months with bad platelet dips down to 1,000 ever 2ish weeks. Nothing helped keep me stay stable so I saw a homeopathic doctor who recommended a parasite cleanse and virus, fungus meds and immun modulator homeopathics and to be gluten free. Now am stable for almost 1 year, thankfully.
The platelets are about 230,000. Now I get them checked every month.
It is crazy but without getting rid of the underlying cause of the ITP which was from parasite and fungus which I got during a Costa Rica vacation I would still have ITP with every 2 week IVIG to deal with platelet crashes down to 7,000, 5,000 and even as low as 1,000. I even went to Mayo clinic last Aug 2017 and they simply confirmed really bad ITP.
Two guardian angel friends gave me advise to see homeopathic doctors in September 2017. So, Sept 2017, I went to homeopathic practitioners and miraculously Oct 2017 was my last IVIG. I slowly tapered the prednisone and Promacta over the next several months and I took immune system balancing homeopathics.
This month, Oct 2018, is my one-year anniversary of no IVIG. I am on no medications for ITP. But my homeopathic has me 100% gluten free and low dairy.
I have quite low platelets (22-37 on average) and only have taken steroids for minor surgery. Really hated what they did to me so will only take them if I need surgery. I have been taking papaya leaf juice extract with what appears to be good results in that my bruises are lessening. We are all different . Some have indicated that it didn’t work for them.
Hi I have been taking a cocktail of vitamins. Multivitamin, papaya extract, selenium, black seed oil, Magnesium, folic acid and Vit B12 for about 8 months my count stayed about 42 - 50. I have a blood test between 1-4 weeks to check. I decided to stop them all to see if anything happened and my count dropped to my lowest ever 28. I started taking them all again and within a week my count had gone upto 50 again. Obviously I’m not totally sure they are working but I’m not stopping them again just in case
I was also diagnosed with ITP in FEb 2015. I was also hospitalized and given 60 mg steroids then tapered 40, 20, 10 for 2 years and tapered again to 5, until it reaches to 1 mg Prednisone for almost 1 year. August of last year I started to stop the steroid and start taking a supplement not telling to of my hematologist, but I consistently see Him and having my CBC monthly. Although I am not yet reaching the normal range of my platelet I am happy that it does not goes down to 1000 before its only 78 in range for 3 years. I continuously taking my supplement once and even twice a day. for 6 months now.
Hi Bueller. Since my diagnosis of ITP in February this year my counts have see-sawed, often depressingly. Initially I was put on prednisone which I responded to but had to be taken off that and then on to eltrombopag (what an awful name!). The maximum dose eventually (after about 6 months) had the desired effect and I couldn’t believe it when the doctor told me the count was up to 177! But this month (one month since then) it had dropped back to 87 - I had begged for him to reduce the dose from 75 to 50 mg because my hair was falling out and has the texture and appearance of candy floss. So I guess reducing the dose was the reason. I am waiting to hear what happens next. I long for the day I don’t have to take any drugs. If only there was an alternative. Like you I wondered briefly if it would be so bad to just have a lower than average platelet count, have a compromised immune system. But I remembered my fear and panic when out of the blue I first discovered why they were rushing me into hospital - the count was down to 1 and it was explained that if I had even a seemingly minor accident (let alone a serious one) I could quickly start to bleed internally, even in the brain which would of course lead to anything from stroke to worst case scenario, death. I really want to talk to the doctor though about being on this drug for over 6 months now. I don’t like what I read (I know, on Google!) about the risks of taking it long term. I haven’t been very reassuring for you Bueller I fear, but sometimes it helps to have fellow sufferers. We will all experience different journeys with this wretched condition. So let’s cling on to the people reporting long spells of keeping well drug-free. All the very best. Don’t despair 🙂
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