Newbie help please. Knowledge is power!

Ann:

That's a fair point....thanks. I just don't realise how much I don't know! It's complex working round these heavy meds that are all different and have a multitude of names. How did the immunosuppressants work for you? Didn't they last for a year?Having a medical background must be a huge advantage.
I am holding at 35mg Pred no symptoms yet. I think it's the drop to 30 that was significant before the last drop. Maybe try alternate days for the first part of next week

Alternate as in 35,30,35 etc

Hi, I'm struggling with the emotional side-effects of reducing Pred.
I reduced to 30mg 4 days ago (2nd attempt as the first reduction was too quick and platelets went down fast at 40mg coming down from65mg) taking it very slowly.
Last week my count was over a hundred, but I was still on 35mg
Bruises are emerging but I'm continuing to reduce... approximately equivalent to 1mg a day overall and refusing MMF at this stage. I think the same thing will happen now despite taking it more slowly.
My vague plan is to continue reducing and, if platelets drop too far, accept IVIG.

My Haematologist Consultant's suggestion is to keep my file of doctors letters and info duplicated so I always have one with me in case of emergency.

I'm trying to get a referral to an ITP centre but my GP is not sure that they will fund it

Anxiety is less but still pronounced with tremors (Sandi's tips have helped with this) but now I have disturbed sleep (waking at 2) and am becoming depressed, so my emotional state is struggling a bit.

Any more input would be very welcome indeed. Info about Med routes open to me in the UK and also just how you guys got through it!

Hate the mess Pred is making of my life and that I have lost my fight:-(

I got through things by learning everything I could about ITP. I no longer work in the NHS so have lost my login to all the medical journal sites so am limited to reading the free sites now. I find understanding something takes the fear away.

Your GP is being cheeky to say that you can't get a referral for a second opinion. As patients we are supposed to be able to be referred to any hospital that we want to go to. See www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

I took MMF for over a year with good results while on it. Counts fell back when I stopped it. Some people stay on it for far longer but I didn't want to.

Just tell yourself that everything you feel is down to the steroids and you'll feel different when you get off them.

Ann pretty much nailed it. The only thing I can add is that you have to try to separate the fear. What are you afraid of, the low counts or the treatments? If it's the low counts, you can reassure yourself by knowing that you are being monitored and can get help before it gets too bad. People rarely die from low counts, and since you respond to treatment, there isn't much to fear.

If you fear the treatments, you just have to believe that you will get through it. You're doing it right now. It's not easy, but time will pass and you will get through it. I know it seems never-ending, but when you get to the right treatment, things will get better.

The steroids cause feelings to be amplified, so be aware of that.

Sandi & Ann:

I'm not fearful of anything specific in that way, it's just this shaky anxiety, it's in my body not my head, it hits me after taking the medication in the morning and wears off a bit by mid afternoon. It's unfamiliar to me and is very wearing because I am trying to control my voice being shaky and maybe urgent sounding, as well as tremors that make me clumsy and jittery. I also have cramps in my hands and feet, claw-like fingers and toes. For the past week there is dizziness/vertigo, this settles after a while, related to changing head position. I've had Labyrinthitis and it's like that, at least it settles... although it is enough to make me nauseous.
I think you are right my feelings are amplified and the new feeling today is depression.

Just a list of moans, I'm sorry, I'm tired and down. I will take Ann's advice to blame it on the steroids... and to think that I will be free of them in a while.

Trying to educate myself has been fascinating and empowering to an extent, but I feel disappointed by the system at the moment...especially lacking any real opportunity for professional dialogue to explore my personal pathway in a meaningful way. I would have liked to have a chance to talk through a couple of the meds I would like to try and not have to do it alone online... and then maybe also be told, as with the referral to an ITP centre it might not be approved because of cost.

Apologies... it's just a vent of frustration at the heart of it. This mind state will pass and I thank you deeply for taking the time to respond to a rant! It makes a difference.
Hey ho,
Socks up, tomorrow is another day

You are allowed to be frustrated. It comes with the territory. Try to keep yourself busy and do things that you enjoy; it will help.

I remember the shaking and fast talking....it's the steroids! Try eating bananas and taking magnesium (not oxide) for the cramping. Steroids can affect potassium and magnesium levels.

Ferv,

I think how you are feeling is normal for having this condition. I can relate particularly when I was on steroids. I also got / still get down especially on the days I go for blood counts and they are no good. I remember walking 5 miles home from the hospital once after just getting a low count, and I have never felt as miserable and flat in my life as I did that day. I tell myself I have a lot to be grateful for and that things are not so bad - but I still can not shake the despondency when I am told my counts are no good. As time passes I learn to handle it the best I can, and for me I try to excercise and eat healthy and that makes me feel as though I am doing as much as I can.

I agree with Ann on the referral to the specialists at an ITP centre, I had no resistance being sent and I feel happier I am talking to a Doctor that has the knowledge and is on the same page as me, which was a huge thing for me. My previous doctors just wanted to put me on treatments I didn't want or suggested removal of my spleen, both of which my new Doctor agrees was not necasarily right for me. I thought you had a choice and as this condition is rare, I think you should insist on a referral if that's what you want.

Keep your chin up and all the best.

Johncarp25;

Thank you for your kind post John, I know you guys get it and that's such a relief. I read your post about the ITP centre and have wondered how it's going for you. I'm glad you feel you have backing for the way you want to deal with this now. That is what I want too and will push for that, thank you.

Sandi has often told people not to focus on the counts and take them a day at a time because they just ARE so variable and unpredictable. So that has been helpful advice too.I have a count once a week and the artificial/steroid high has been great. At some point the count will drop as the steroids reduce I know.
The tips on self-care are a good idea, even more focus on healthy diet, supplements (i just asked for vit D and vit B12 to be checked) also K is vital I understand. I have looked at the lists of food that damage platelets and have had nothing from the list in 2 months. I'm not sure that that makes much difference. Just thought I'd throw everything at it

Thank you for wise words...
Chin up
I've had my wallow and the day is beginning, so I'm taking a deep breath, picking up my load (which could be much much worse)...

Let's go kick arse...

Sandi:

Thanks...that's really helpful. I'm not a big banana eater and have been buying more and then they are gone. As they are right now... the body knows! I'm also out of magnesium.
New dawn, new day and yes...things to do ...it's going to be a good one
Wishing you a great day too.

Also with the cramps, make sure you keep well hydrated... lots of water is best. Steroids cause the sugar level in the body to go up and so the body gets rid of it by making more urine. Same as diabetes, so you get dehydrated which then causes cramps. The only time I've had cramp actually in my feet was when on steroids so I know that one.

Ann,

Thank you! I will up it. I am more thirsty and have been consciously drinking water but probably not enough, even so! Now I see why...and that's easy to address!

I'm 2 days into the next reduction... 25mg! I have some small blue/black bruises but no other symptoms.
The cramps are no longer a problem, thank you... and bananas!
I've started magnesium and am taking D3 and K2 as well as vit C complex. I'm following dietary advice (to the letter) and am losing weight...apart from fat cheeks but that's better than gaunt So far so good.
I am considering the next taper depending on counts and my heamo when I see her tomorrow.

For some reason this next drop feels significant..do the adrenals need to start waking up now?
I was thinking about alternating 25/20/25mg until I feel my body settling.
Does that sound ok or any other ideas?
I have noticed it takes about 7 days to adjust to the weaning process and there are usually 1or 2 tricky days.
Also I have aching calf muscles,is this anything I can do something about?
Still dizzy and have fallen over a few times and my gums have disappeared????!

Any advice for this next stage would be very welcome.

The body makes about 7.5 mg of steroid per day so it won't be waking up yet. I wouldn't think it would make any difference whether you drop alternate days or not. It depends how much you want to get off it. If you go too slowly it'll take for ever! I dropped 10mg a week until I got to 20mg and then by 5mg a week. My count stayed normal for 6 weeks when off it altogether and then crashed overnight down to 1 so the taper was not the problem.

"There is uncertainty about disease resolution and/or therapy has been given for many weeks. Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month"

comes from the NICE guidelines for prednisolone reduction at cks.nice.org.uk/corticosteroids-oral#!scenario

Ann&Mrs B

Crikey that's even slower. I was trying to go slow because I crashed around 40-35mg dropping in 10s last time and it has been better, but such long haul. 18 weeks more according to NICE and my maths. In time for Christmas all going to plan...trying to be positive.
Thanks for clarifying and the web link too I'll be patient but not comatose No alternating either.
How disappointing to crash after 6 clear weeks, it's a hard journey.Thanks for telling me Ann I am sad to hear it, but also think it's important not to have false hope.

Do you think the research on 2 types of ITP will make a difference that will be helpful to us in the UK? I suppose the idium? test was sort of filtering in advance of the full story re the spleen.

Might be a bit out there, but have either of you heard of the Marshall Protocol for autoimmune stuff (a bit wacky maybe)?
And what about Joan Young's story, any thoughts on that experience?

Thanks again for your input!

Ferv

Hi Ferv..

I read a lot about the Marshall Protocol when first diagnosed.. However as it advocates reducing one's vitamin D intake I'm not interested in it. Having osteoporosis means I need more vitamin D. I'd rather have low platelets than crumbling bones

Yes that concerned me straight away as it is against all other guides I have read. Thought I'd see what you thought before I spend ages trying to understand it!
Thanks

I wonder if the NICE guidelines are considering people who are staring at such high doses. Most people take 10 or 15 mgs and think that's a high dose. If so, that would make more sense to coming off it so slowly. With us starting high, I'm sure we don't need to go quite so slowly.

There's a theory about vitamin D being low in autoimmune disorders so I can't imagine making it even lower. My haematologist now tests for vitam D regularly and gets us to take supplements if necessary.

Just been on uptodate.com..they consider careful tapering from 40mg/day

Ann

Ooh like the sound of your haematologist!
I know that my counts dropped after 40 at the first try. Then following advice I went v slowly and so far have maintained a better count...mostly over 100, but wait and see what today brings!
The other side is, even though mgs so much lower, it's still a high dose over 7 weeks now and counting!

Mrs B
I sent a reply but must have accidentally deleted it, and I thought my brain was returning:-)

I couldn't see much on the site but it looks interesting, Later, I'll have a look at subscribing because the tables might be helpful.
I'm relying on watching my body responses and as they settle and adjust I drop 5mg, it seems to take a week, If I change to 2.5mg drops at 20 mg that might make sense, but stay with my body's pace, as best as I can monitor it.
Whatever happens then, I feel I'm giving it my best shot.

My haematologist has my vitamin D checked 3 monthly too. Back end of last year I was on Vit D supplements for 12 weeks as levels too low.

MrsB

That sounds good. I have asked my GP to check and we're waiting for the result for the B12 too. I saw that someone posted monthly B12 shots being helpful to maintaining counts whilst reducing steroids. I supplement anyway with D, but I know that often, even so, it isn't enough either, from what I've read. The haematologist is holding Pred at 25mg for a couple of weeks as my count is falling, still over 50 so not problematic.

Thanks to all who told me to push for the referral to ITP Centre..it seems to be going ahead

I am down to 17mg and the Pred side effects are diminishing. Until now my counts have been ok and even good at times (120!).
BUT..
Has anyone had a resurge of generalised inflammation during taper?
My eyes are red dry and painful, my tongue feels swollen and dry
The site of the marrow aspiration (2 months ago) was painful a couple of days ago and now there are bruises over it.
My sinuses are congested and hot
My throat feels hot. etc...

Is this the flu' like feeling you wrote about as part of withdrawal?
Any suggestions?

Yes, inflammation can recur while tapering because Prednisone is an anti-inflammatory and holds it at bay while on the higher doses. The things that you are describing though, swollen tongue, red eyes, etc seem odd. It sounds more like a sinus infection or cold.

Thanks Sandi,

I think it's probable that these things are actually part of what has been already diagnosed in the past.GERD and dry eye not forgetting UC...I'm cooking inside!!!

To my mind it's all likely to be a sign of systemic inflammation and I am trying the dietary approaches as listed on this site.

Because of the autoimmune nature of ITP, I just wondered if generalised inflammation was experienced by others on the forum, and how it was for them as steroids reduced and how they coped. Maybe there isn't a link at all...
it's just me ;-\

People usually notice inflammation in joint and muscles while tapering. However, if a person already has other existing autoimmune inflammation, I'm sure that could come back as well.

Platelets dropped suddenly to 30 and going down fast, so steroids were increased to 10mg temporarily. I am being pushed towards mycophenolate mofetil , which i resisted originally because I wanted to be sure it was the only option. Here in the UK it seems to be the only next step... and I am giving in. Seeing the consultant next week to organise it.

Does anyone have any advice please? About what to expect and how to manage it.

It isn't used often, so you may not get many replies. I was on it for Lupus for about a month, but quit because it affected my job performance. I couldn't think straight. I've never heard anyone else who had that problem though, so it's not common. Mostly, it can cause gastro upset which some people can tolerate and some cannot.

It can take time to work, so patience is key. I don't think that is the only choice you have; I think the doctor is making you think it's the only choice that you have.