Diagnosed 3 weeks ago, poor response so far

Hi everyone, I am so grateful to have found this group to learn and discuss my condition with. I am 46 and was diagnosed 3 weeks ago with ITP. It seems to have been incited by a bad virus I got and 10 days later I started bruising. My blood work revealed that my platelet count was 5. I was started on Prednisone 60 mg/day and a week later got up to 87 then then the next week dropped down to 27. I was leaving town so I got an IVIG infusion given in 1 day instead of 2, platelets checked 4 days later only went up to 40.
I have some questions and concerns:
1) Does anyone have better success with increasing the dose of prednisone or changing to prednisolone? Was going to discuss with the dr. as well when I see them next week.
2) If I stay at or around 40, I like to jog, really helps me mentally as much as physically. Anyone think I'd be ok to continue?
3) I stopped drinking wine (only drank a glass few nights a week), anyone have any improvement with this?
4) I have a poor response to meds so far, I'd prefer to not take Rituximab at this point unless I get in trouble, anyone have experience in taking this drug earlier at the time of diagnosis versus waiting till later?
5) I think I would like to have a bone marrow aspirate to check the line of cells that produces platelets before more immune suppressive drugs are added? Any opinion? On my bloodwork ONLY the platelets were low, everything else normal. Also may ask for an ultrasound of my spleen. Opinion?
Thank you for your time and opinions,
Sheri

Hi Sheri. I'll try to answer your questions. I'm sure you'll get other input as well.

1. Re: increasing Prednisone - you are on a pretty high dose. 60 mg's is the standard starting dose. It is not generally prescribed any higher for a person of average weight. Increasing it might give you higher counts for a while, but you do not seem to be a good responder so I don't think the dose increase would do much in the long run except cause worse side effects. I am a good responder and 60 mg's would get me to about 250k in a week or so. Prednisolone is so close to Prednisone that I doubt switching would make any difference. Both have been used here and people either respond to it or they don't.

2. I would think that 40k would be okay to jog, but that would depend on your symptoms. I'd also check with your doctor on that one.

3. Most people here agree that drinking alcohol in moderation is okay. Wine is known to thin the blood rather than make counts drop, so it shouldn't affect your counts unless you have some sort of sensitivity. Too much alcohol can inhibit the bone marrow from producing platelets, but that is usually when people drink too much.

4. There are no rules regarding when to use Rituxan. Some people use it early on and some wait. It is a heavy duty treatment and not one to be taken lightly, but it does have it's place. It's a tough decision. You could go on and on with Prednisone and never get any where, or you could move on to Rituxan and maybe get a remission. You'd be wondering why you didn't just do that in the first place. But sometimes the goal with ITP is not to achieve normal counts; it's okay to just maintain a safe count. Sometimes less is better. If you did have a virus that triggered this, you might have acute ITP in which case, time would resolve it more than drugs would.

5. Bone marrow biopsies are not necessary to diagnose ITP and at this time, they are not helpful in treatment decisions. It is assumed that most people with ITP do have both destruction and production problems (recent research) and a bone marrow biopsy does not provide any information about that. Many doctors think it does, but the ITP experts say that it does not. Spleen scans are not very useful either unless the spleen is enlarged. That can usually be determined by palpation. The spleen should not be enlarged with ITP and if it is, that can mean that there is another problem going on, usually liver related.

Historically, ITP was believed to be caused by increased platelet destruction at a rate that exceeded production by a compensating bone marrow. New knowledge has questioned this model, providing evidence that platelet production is also decreased in many patients with ITP.


www.bloodjournal.org/content/117/16/4190.full

Sheri have a look at this it's written by specialist nurses as an educational tool for nurses who have no knowledge of ITP.
have a look at this it's written by specialist nurses as an educational tool for nurses who have no knowledge of ITP.


www.ebmt.org/Contents/Resources/Library/...s/ITP%20Handbook.PDF

Thank you Sandi for the wealth of information! It's ironic that I'm a veterinarian and treat similar conditions in dogs and use the same drugs (not the IVIG due to cost).
Love the journal articles, sooo helpful!

Then you are familiar with ITP! Most don't know what it is so you have a good start!

I know, poor dogs on steroids. I had a dog with Cushings and even when treated, the poor girl seemed to have steroid side effects. That was an expensive disorder to treat!

Hi Mrsb04, I tried to open this link but my computer can't. Would you mind resending it another way or cut and paste the article?
Thank you so much for your input.
Sheri

Sheri

Have sent you a message

Hi Sandi,
I have a question for you. I was reading other postings and saw my doctor today, I am at 32,000 (I seem to go between 25-55 so far) and discussed that I'd like to continue to wean off steroids 10 mg/week (I'm at 40 mg now) and just see where I end up. As long as I'm not clinical, I don't want to use any other drugs at this time unless I have an emergency. I started taking the Restore Immune, Blood Well supplements from get well natural and have started yoga and eating better. I know it's a long shot that alone will help but I figure it won't hurt. We discussed Rituximab and I thought I read that 2 treatments are equally as effective as 2. My doctor is really great and didn't balk at me when I suggested this if I go this route in the future. Is there a journal article regarding this change in protocol? Thanks,
Sheri

Hi Sheri:

Here are two articles that discuss four lower dose treatments.

www.haematologica.org/content/93/6/930

www.haematologica.org/content/92/12/1695

I don't think there are many articles about two infusions vs four, but it has been tried. Here is one article regarding one infusion vs four. The article references childhood ITP, but I don't know why i wouldn't work for adults too.

www.haematologica.org/content/90/2/281.abstract?ijkey=78873704fe05255bc16d48afd15c9d680f85e6e1&keytype2=tf_ipsecsha

I'll look again later to see if I can find any more.

Sheri:

This is a study that compares the results of two infusions vs four infusions.

www.bloodjournal.org/content/124/22/3228?sso-checked=true

Hi everyone, I am terribly confused and would like some clarity. I am now week 7 of having ITP, I am weaning off of steroids which didn't really help, I am currently taking 30 mg. I started the Restore Immune, Blood well, herbal treatments and been on the full dose of 3 caps 2 x day for 1 week now. My platelets had been between 25-50 and this week they were 13,000. I had noticed a considerable amount of bruising but not too bad. When I was in the doctors office you'd think I was carrying a bomb. My doctor discussed this low count with me and strongly recommended some sort of treatment to get me a little higher. I elected to do 2 days of IVIG (right now I'm in the chair getting my 2nd day of infusion) of 1g/kg each day. I have been reading on this site that you shouldn't really worry about the numbers and be more concerned about the signs. I understand that below 15,000 puts you at higher risk for spontaneous bleeding, I was feeling great: doing yoga, eating very healthy, starting riding my bike which made me feel tons better. When you guys have "signs" that you decide to treat, is it a lot of bruising, nose bleeds, etc. I'm just wondering, once I wean off the prednisone (I hope to be off in 3 weeks, decreasing 10mg/week), I expect the IVIG will wear off cause it didn't work very well last time, i'm sure my platelets will drop again, if I just have a few bruises but if I'm below 15,000 do I need to get a treatment of some sort? The doctors say yes but it looks like some people on this group say you don't really need to.
Thanks so much.
Sheri

If you decide to watch and wait, like many here, it would be helpful if you had a doctor who did not panic and who supported you.

Can you ask your doctor for the reason they feel you need to treat given your symptoms? Can you have a good conversation with them to come together to a decision on how to proceed?

Since you are active, for example bicycling, you do put yourself more at risk than a sedentary person of injuries that could cause bleeding. That's a pretty low count. Since you don't respond well to steroids you don't yet have any sort of treatment that would help in an emergency like if you needed surgery or if you got a bad head bump.

Things to consider.
Erica

Sheri
Be careful coming off steroids too quickly once you get down to 10mg/day. You don't want to induce an adrenal crisis by stopping it completely at 10mg.

Below are the UK guidelines.


The problem has resolved and treatment has been given for only a few weeks.
Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, e.g by 2.5mg every week, fortnight, or month.

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.

Symptoms of the disease are likely to recur on withdrawal .
Reduce by 1 mg every month.

I'm not saying you have to be quite this rigid but take care. My consultant haemo cut me down from 10mg to 5mg a day telling me I would be fine. I felt absolutely dreadful. I couldn't function properly at all. GP hit the roof and put me back up to 9mg/day. It took me a good fortnight to feel normal then I came down at 1mg a week to 3mg. I felt dreadful again and had to go back up to 5mg.
Next I was on 5mg/ 2.5 mg alternate days and felt fine. 2 days ago I dropped myself to 3mg a day but too early to tell yet if it's going to have any effect on my well being .

Anne x

I agree with Erica. You don't have to treat at any count if symptoms are few. Doctors who are familiar with ITP tend to understand that better than doctors who are not.

Since IVIG is such a temporary solution, it's not feasible to continue that long-term. Having a better plan would be a good idea. You have some time to think about it now if IVIG lasts a week or two.

I got to a point where I didn't treat until I was under 10k. I had bruises and petechiae, but never had any bleeding (other than menstrual). I wasn't as active though, unless you count racing my kids around to activities and working.

You have to do what you are comfortable with. It can take months to get things under control in a way that suits your life. Patience is key.

All of your input helps a lot! Can I ask what works for you guys when your counts drop really low, like Sandi you said you treat when it's below 10,000, what works for you?

Sheri:

I've been in remission since 2004. I was diagnosed in 1998. At that time, options were more limited. I tried Win-Rho which didn't work at all. Prednisone was about the only choice I had then and it worked very well for me. My counts shot up, but eventually dropped back down. After years of Prednisone, I got sick of it and just then, Rituxan came out. I was the first at my Hemo's office to use Rituxan for ITP. Long story short, it worked, but I had a really bad reaction and couldn't use it again. It seemed to have caused this remission, but I ended up trading ITP for a different problem triggered by Rituxan.

Back then, everyone (doctors) pushed for 'normal' counts. They didn't agree that 'safe' counts could be a real goal. Doctors treated counts, not symptoms. Things have changed a lot.

Hi Sheri
Wondering how you are doing?

Hi, thanks for asking how I am doing? I am getting my CBC tomorrow but no new bruises so far. I had a second opinion at Mayo Clinic here in Jacksonville and right now I am leaning towards a splenectomy. I have read the articles that recommend waiting for atleast 6 months to a year but am seriously considering it. I'm supposed to have a consult with a surgeon this week.

Are you still on the prednisone? Have you tried any other treatments?
Best,
Joanne

Sheri
Why are you considering a splenectomy so early on. There is no guarantee it will work and it is not without risks ?
Anne xx

Sheri you have to do what you feel is best/right for you, period. You have only been diagnosed about 2 months? I was a few years younger than you when diagnosed, 2 months later we were moving to Tokyo with me on 60mg of prednisone & not knowing if I'd have a hematologist. At the time it was prednisone or splenectomy, since a cure could not be promised if spleen removed I went with prednisone. I did what I felt was best/right for me. Plus a splenectomy then would have meant we could not have moved overseas.

Really read and research and make that decision informed. The splenectomy is forever so shouldn't it be a last resort?

Good luck to you!

Here are two good videos to watch before making any decisions:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

www.onclive.com/insights/immune-thrombocytopenia/Risk-of-Thrombosis-in-Patients-With-ITP

Yes, I am considered refractory to prednisone and IVIG, next on the list was either Rituxin or splenectomy

Sheri there are several treatments to try before even considering a splenectomy. It's a very drastic step so early on. Over here in the UK we get indium scans to show areas of platelet destruction. If there is any liver involvement spleen removal would not be considered an option.