Welcome, Guest
Username: Password: Remember me

TOPIC: Newbie help please. Knowledge is power!

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49425

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Hello all you sanity-saving people, thank you!
ITP it's a mystery isn't it, well it seems that way to me... Here is my story.
I experienced increasing bruising over months (which doctors did not react to despite it being a listed rare side-effect of the following medication). I developed: spontaneous, large, blue/blacks, mouth blood blisters etc. I had been taking mezavent (mesalazine) for 9 months and decided to stop them, as I believe it to be linked. At the same time I had a full blood test at last, and went to Tuscany for a couple of weeks B)
On my return I was told my platelets were at 27. Hospital checks followed with levels of 16,19,21and19, also bone aspiration showed all well otherwise. Diagnosis of ITP and steroids prescribed.
I decided to wait and see, because I was hoping for a further recovery. Yes, so many of you must be familiar with this route, aren't you? Anyway over the next few weeks my platelets went up and down, but no bruising, wow... my magical thinking must be working...avoiding the "no no"foods like red wine and coffee. It seemed reasonable that, if there is no bruising, the platelets will surely rise. Wrong. Today, I woke with a couple of blood blisters in my mouth, petechiae, small black bruises appearing again, headache, feeling rough etc, you know all the symptoms. I folded, I am on the prednisolone journey and took my first dose (65mg) this morning with a side dish of PPI and osteoporosis support drugs.
I am in the UK and, because of the NHS, we don't have to do the thinking about drugs v cost thing. However, the thinking is done for you here and the gateway drug for treatment seems to be pred, nothing else was offered anyway. My hematologist said it was my decision, but gave me little in the way of facts such as other possibilities and latest research and stats on which to make that decision.The information here has been the most help of all.
QUESTIONS:
1, Are there better opinions, rather than steroids, in my case that you would recommend
2, How can I support myself best during the next few weeks? (sh don't tell anyone, but I am scared)
:) I'm so glad this community exists as I'm finding it a lonely experience. Tomorrow is my 66th birthday and I feel I have a some new and most amazing friends to help me through what comes next. It would be great to hear from you!

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49426

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Hello, everybody starts on steroids no matter where in the world they are. I'm not really sure why because they rarely work for long, but there you are. Your job now is to ensure you don't stay on them too long, get to a good count then slowly taper off over three months and if your count doesn't stay up for long afterwards, then ask to try something else. Mycophenolate is often the next step here in the UK. Or maybe rituximab. You'll need to research a bit to see which you would prefer. You probably won't get one of the new TPO drugs so soon but you could ask if you wanted.. they are romiplostim and eltrombopag.

There are some specialist ITP centres, and if you're not being seen at one and would like to then you will need to ask your GP to refer you. Either way, learn a lot and try to speak up about what you want to your haematologist as time goes on.

ITP centres.. www.itpsupport.org.uk/itpforum/centres.htm
The following user(s) said Thank You: Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49427

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
Hello Ferv - welcome to the Forum. You're right, knowledge is power. The more you learn, the more you will feel as if you have control and you won't be as afraid.

Steroids are generally the first treatment given; that has been the norm for many years. It's cheap and can cause remission for some, probably the ones who actually have acute ITP but that cannot be proven. Anyway, the side effects can be horrible so get prepared for that. It gets worse the longer a patient is on them. You can do some things that help like avoiding salt and sugar, and staying active. Once you are on steroids, you can't just stop taking them. They should be tapered slowly. Some people get a very fast platelet response and some people do not get any response.

Most people agree that the treatments are worse than the disorder itself. In the majority of cases, ITP can be managed successfully, but it might take some time and a few different treatments to find what works best for you. Patience is important and there can be many ups and downs along the way. The key is to stay calm and try not worry. ITP is rarely fatal and once you are monitoring and treating, the risks are reduced significantly. A count above 30k is considered safe and even below that, if there are no symptoms, people are usually okay.

Take the time to read the posts and see the experiences of others. You will become familiar with treatment options that way and it will help in the long run. In the meantime, feel free to ask any questions that you might have. There is always someone around who is always willing to help.
The following user(s) said Thank You: Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49430

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1213
  • Karma: 7
  • Thank you received: 300
Hello Ferv..welcome to the world of ITP...I'm a nurse with ITP & live in the UK too. I paid to join the ITP support organisation as per Ann's link..To be honest I have gained much more benefit from this organisation's forum which this cost me nothing to join.
The following user(s) said Thank You: Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49433

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I agree MrsB. The UK Association does hold a very good Patients' Conference each year. I've been several times and learnt a lot so they are worth keeping an eye out for.
The following user(s) said Thank You: Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 3 weeks ago #49434

  • Melinda
  • Melinda's Avatar
Fervenz am I right - you just started prednisone today? I'm one that had a prednisone "remission" after I got off it (very very slowly) my count stayed between about 82k and 125k for probably 10 years (I was diagnosed in 1989, so memory isn't all that
good now :) ). When a tetanus booster made my platelets sink like a rock I refused prednisone so had WinRho and that put me back in "remission".

Good luck to you - keep us posted!

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49454

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Thanks for your quick response Melinda. I am certainly encouraged after reading so many sad stories.I'm so glad all is well with you.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49455

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
This is info is new to me,thank you Ann! I thought I had researched but didn't know about the drug routes or the centres. That's great.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49456

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Hi Sandi, your name pops up everywhere on this site. Thank you for taking time to reply to me. I am also concerned about vitamin and mineral supplements I take, is there anything I should avoid?Vit C, Vit K, and a general one.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49457

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Hi Mrs b04..Yes! It's an amazing group of people on this forum and nothing I have looked at comes close, and I shall take your advice about taking care with what to pay for! Good to be in touch with someone "local"

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49471

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
The only Vitamin you should avoid when counts are down is Vitamin E since it can cause platelets to be less sticky. Other than that, Vitamins as a rule do not help or harm ITP.
The following user(s) said Thank You: Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49479

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1213
  • Karma: 7
  • Thank you received: 300
Fervenz I love the term 'local'..where are you in UK.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49480

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Hi Mrs B...well you know..all things are relative and it is the same time zone.
I'm in Surrey, how about you, local?

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49484

  • Melinda
  • Melinda's Avatar
Even when my counts were decent, but not in normal range, my doctor told me not to take a multi-vitamin with E in it. I was having trouble with little veins breaking in my hands and that hurt and would leave a black & blue spot that hurt - I could feel when one would break. She said stop the multi with E, I did and that now rarely happens. I also stay away from Omega 3

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49485

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1213
  • Karma: 7
  • Thank you received: 300
I'm in Leicestershire Fervenz

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49491

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Thank you Melinda...that vein breaking thing sounds horrid! I shall keep taking D & K and check my multi for E as Sandi also advised and definitely not add Omega 3. Do you think minerals are OK e.g. biotin magnesium potassium etc?

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49492

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Hey Mrs B we're almost neighbours! I'm up and down the M1 A1 route to my daughter and her family, quite often, so I pass by. How long have you been dealing with this ITP stuff and how's it going?How do you manage nursing with it? My daughter's a nurse and she's fatigued by that alone.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49503

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
I'd check with your doctor before adding Vitamins and supplements. If your levels are fine, you don't really need them. High levels of some things can be dangerous.

Many people with ITP have low levels of certain things (B-12, Vit D, etc). It's not a bad idea to get checked and if you are low, you'd need to take that particular one(s).

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49514

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1213
  • Karma: 7
  • Thank you received: 300
Hi Fervenz I've had it a year now.. I have been on a gradual return to work for the last few weeks. Not because of the ITP but because of the steroids making me so ill.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49521

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Thanks Sandi, I'll ask my GP the haematologist I saw was quite dismissive so I shut up. I thought I ought to have a bone density check too. Surprised it wasn't offered at this stage. I have been prescribed Alendronic acid though so maybe that's a good as it gets. I'm sorry that you have had/have such a tough time of it, and thank you so much for passing so much of your hard-earned knowledge on so generously.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49522

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
OMG Mrs B, that's rough! I'm on day 4 and quaking! If you care to tell me about your experience I am interested, it certainly sounds like a bumpy year. Are you feeling OK about the return to work pace?

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49525

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
Ferv:

How old are you and how long have you been on Prednisone?

I get yearly bone densities now because I've been on Prednisone off and on since 1998, and on continuously since 2005. It is important if you're on steroids for a long time!

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49526

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Sandi

I am 66 and was diagnosed only a few weeks ago, and am only on day 4 of 65 mg prednisolone, which I understand is used interchangeably with prednisone. I was diagnosed with another autoimmune illness, ulcerative colitis, 30 years ago and have done reasonably well managing it... once I took charge (guess you know how I mean that). The initial period mentioned was for 3-4 weeks on pred before reducing, but I can see that is unpredictable which is why I wanted a baseline now. Maybe it doesn't matter?
I'm bloating badly today, steroid friendly salad not agreeing with UC, perhaps.
How are you managing side-effects after all this time? By the way I read your post on salt, that's my thinking too for UC.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49531

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
Yeah, you should probably get a bone density. My GYN usually orders that. Because you are over 50, a baseline would be a good idea.

My sister has UC. She's been able to control it pretty well over the years, once she was diagnosed properly.

I'm only on 15 mg's of Medrol/day and have been getting a Solumed IV once a month (not for ITP). I live with the side effects because I know I'll feel much worse without it. I've been pretty lucky I guess because so far, I've only had stress fractures in my feet a few times and have a permanent moon face. I could lose 20 pounds and if I dieted and was able to increase activity, I could probably do it. I keep wanting to try....

Good luck with Prednisolone. It gets worse as it goes on. Not the most pleasant drug for sure!

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49533

  • johncarp25
  • Offline
  • Posts: 39
  • Thank you received: 12
I am also in the UK and find this site great, I have had this since 2012' and have been on prednisone.

I agree with Sandi, the high dose steroids was worst than ITP for me. The longer I was on it the worst I got, it worked initially and I was in remission for 9 months but I have since relapsed. On the NHS I was only offered steroids or spleen removal or one other drug that I forget, but I researched it and didn't fancy the side effects of that either so declined the spleen removal and the drugs.

I was frustrated that the drugs and options that I read on here were not considered. I took Ann's advice and got myself referred to a specialist ITP centre. The appointment is next week, so I am waiting to see what they say.

For me, I get fed up of it, this site keeps me sane, and I find it more of a nuisance now, constant hospital appointments, etc.

Good luck.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49539

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Good morning John,

Thank you for your response. I'm sorry that you are not finding the way things work here very helpful so far. That is my concern too, finding someone to work with you in dealing with this is vital.This was the route I was preparing to try but the actively engaged haematologist is pivotal.
ouhsc.edu/platelets/ITP/crystal.html

I suppose you've seen this pathway guide that seems to be adopted generally:
www.swlmcg.nhs.uk/PbR/ITP%20Treatment%20Approval%20Form/SWL%20ITP%20treatment%20pathway%20v1%20170714.pdf
Does it ring true to your experience?

How did you get referred to an ITP centre? Please post your findings on that too! Good luck with it!

As for the pred, I'm on day 5 and everyone says how bad it gets....but they don't go into specifics. I have read the side effects of course but what was the most difficult for you?

It sounds as if you've got to a level now where ,despite the hospital visits etc, you are managing OK? Am I right in thinking that you'r not on meds now, as well as declining the splenectomy?

Sorry to inundate with questions... ferv

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49540

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
Sandi

Thanks for your response, I will get on to that bone check next. Diet, think that's going to be an issue for me too. I feel I've expanded a lot this week. Because it's all new I have watched what I eat like a hawk, but it is scarily happening already. It must be so much harder down the line! Am I right in thinking you have another autoimmune...lupus? I think I read that on a post, I'm so sorry that's rotten luck. My sister has MS and is on the diet which has been helpful in slowing progression she believes. This autoimmune trait is a thread, don't you think?

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49541

  • johncarp25
  • Offline
  • Posts: 39
  • Thank you received: 12
Ferv

Thanks for the links, I had not seen that protocol. It does ring true broadly. I am no expert on ITP, so just talking from my experience, I am not knowledgable like others here.

I had prednisone, tranexamic acid (as I have had active bleeding when I was under 10) although under 10, I had daily checks but was not admitted, and I know people have been hospitalised at higher counts. My initial responses to prednisone was good, and I think it's true to say this condition is not just a numbers game. One doctor told me it was not just the number of platelets but the quality, I can not remember, maybe someone else can elaborate, but I was basically told my platlets ( at the time of being low, were good quality, large? I think, and that he was happy to see less than 10 good quality platelets than someone with 30 bad quality ones. Seems logical. Anyway, I took Ann's advice and at one of my follow ups with the hospital asked to be referred to a different hospital that is a special centre for this. This was as at my latest relapse in March, I refused prednisone, the next option was spleen removal. Nothing in between just one or the other. After I refused that, I was offered azathioprine, didn't like the side effects and refused that. I know I sound difficult, but have really come to the conclusion that a lot of what is offered is worst than the condition.

Prednisone - just generally felt not like me, snapped at everything, acne, couldn't sleep ( had to go on sleeping tablets). Felt hungry all the time, I just don't think they suited me and wouldn't want to take high dosage again. The longer it went on the worse I got, I thought they were altering my perspective on everything, hard to explain, as I know some people stay on them and are not too bad.

My last relapse was March and unlike other times I have remained lower than normal, under 30 constantly, I have had two black eyes (weird but I get them with this), bruises and blood blisters, but as I have refused the drugs and splenectomy, that's what I get. The main thing is I feel in control, these are my choices that I am happy with for now. I just wait to see what happens.

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49542

  • Fervenz
  • Offline
  • Posts: 129
  • Thank you received: 6
John

I am so pleased to hear from you because your attitude is similar to mine and you are further down the line so I benefit from your experience, thank you! The platelet thing makes total sense to me...already I can see it fits in with my levels and bleeding. My lowest measure has been 16, always under 30, but I must have been much lower before I was diagnosed because of the visible signs. I liked Crystal's story as it was handled so calmly despite her platelets falling so low. Blood pressure is key it seems, so I'm going to look in to that. Mine's high side of normal before pred.
How old are you John? I'm just wondering as you've had this since you were 10, if I'm right? That's tough. Where abouts do you live?
Do keep in touch please,
Thanks, Ferv

Please Log in or Create an account to join the conversation.

Newbie help please. Knowledge is power! 4 years 2 weeks ago #49544

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2333
Yes, Lupus. Autoimmune disorders can run in families, but members usually do not get the same disorder.

Prednisone can cause weight gain, water retention, insomnia, feeling wired, mood swings, disassociation from self, noise sensitivity, vision problems, etc. During the taper, it can cause fatigue, muscle pain and weakness, joint, pain, fatigue, depression, etc.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo