Advice please.

[Arnoldthecat]

Hi all. For those that have contacted Prof Harrison my question is did you have to go in person or would she do a telephone appointment. I have been taking Hydroxy for nearly four months platelets have come down but now only slowly and a long way off from getting below 400. The Hydroxy was increased from around six weeks ago i take 500 3 days a week and 1000 four days a week, alternate days. I wasn't feeling too bad on the lower dose, apart from the fatigue but since being on the higher dose it is playing havoc with my digestive system swinging from constipation to really bad upset stomach. I am finding it impossible to arrange to do anything. Not getting much advice from specialist nurse apart from suggesting speaking to a pharmacist. I would like to see a MPN specialist but unless this settles down i have no idea how i would manage to get there, terrified i am not going to find a public toilet.

[Mostew]

I emailed her when I had a question. A few months ago. Good response

Appointment once a year . I'm going to London next month . First Appointment last year by phone.

How were you feeling on lower dose of hydroxicarbamide? Consider the pros and cons of platelets decreasing slowly .

If your next appointment is a long way away , request earlier

Hope you get it sorted soon. .

[Arnoldthecat in reply to Mostew]

Thank you. I was ok on the lower dose, problems started shortly after the higher dose.

[bordeauxgirl]

Hello , I take a shed load of pills each day including Hydroxy but never on an empty stomach, no matter what time of day or night it is, I am prone too of having a weak stomach that will react . Please try to experiment and eat with this med, my little regime has never let me down. Hope my experience helps.

[hunter5582]

Sorry to hear about the issues with HU. I also had GI issues at an even lower dose. It may be that you cannot tolerate HU at a dose high enough to reach your target. Fortunately, there are other options to treat the ET.

Suggest you review your treatment goal with Dr. Harrison or another MPN Specialist. There is no reason to set the PLT target at 400 for most people with ET. Some MPN Specialists use 600 as a numeric target. silvermpncenter.weill.corne... Some MPN Specialists consider the delta (degree of change) as the target. The key is to have an individualized goal based on your unique MPN profile.

It is worth doing whatever is necessary to consult with Dr. Harrison. You could ask whether a tele-video appointment is possible. These are much better than a telephone appointment. You could also inquire about discontinuing the HU for a few days to enable you to travel for a live appointment. That would be something to discuss with Dr. Harrison and/or your MPN care team .

Wishing you all the best.

[Arnoldthecat in reply to hunter5582]

Thanks Hunter, yes i will ask about stopping it for a while.

[srtdc in reply to hunter5582]

Hunter...you never cease to amaze me with your kindnesss, concern and the valuable information that you provide. G-d Bless you... many have been taught to just check the boxes, rather than treating the patient. Your advice to not be too concerned with the numbers is spot on. Each case needs to be evaluated .

[Mostew]

or maybe just go back to lower dose temporarily before consultation as you were ok .

[Exeter21]

I emailed . But also I stopped the Hydroxy immediately I got the constant diahorrea & gastric problems DO NOT Just put up with those symptoms it’s your body rejecting drug now too many tablets.

Ring your Haemotology & tell them . I lost 5 kgs and became very ill digestive system on doses of Hydroxy. Took 6 months to recover. I contacted Claire Harrison by email . I took myself off Hydroxy and informed Haematology how ill I was getting . 2 months without anything then for body to recover. Then Peg Interferon which Dr Harrison is trying me on . She did telephone consultations. .

If your Haemotology are good they would realise you cannot tolerate that dose. It can damage your gastric system . Julia . Exeter .

[Arnoldthecat in reply to Exeter21]

Thank you Exeter21. The Haematology Dept are not giving me a lot of confidence, i get the feeling that you just have to put up with side effects as long as the platelets are coming down, that is the only focus. I will try to contact them.

[Exeter21 in reply to Arnoldthecat]

No that’s not right . Don’t suffer with it . Haemotology should have told you to contact them if you get those problems . I think our MPN illnesses are ignored because they don’t understand it . There is a phone number on this site for Guys Hospital Professor Harrison s secretary & email . Regards Julia .

[RazB]

hi, I’ve been on Hydroxy for about 13 years, I’m on a higher dose than you and have been for years and always take pills on a full stomach and late afternoon as they make me tired. I have regular phone appointments with either Prof Harrison or one of her excellent team. They are super helpful and flexible. Hope you can get this cleared up quickly. 🤞

[Arnoldthecat in reply to RazB]

Thanks RazB. I take after my evening meal but it doesn't make a lot of difference.

[beetle]

my first appointments with Claire Harrison were in person. I traveled from Scotland to see her. I now have regular phone appointments. My answer to your question is yes, I believe she does phone calls with new patients but in my experience speaking with a new doctor is preferable in person or at least by video. You would need a referral for an appointment with her no matter how the appointment was conducted I think. Good luck

[Pippapot]

I currently take Hydroxy 500 five days and double dose on two days. Recently I too have been having gastric problems, stomach pain, reflux. My GP put me on Omeprazole and Gaviscon and put it down to the aspirin and iron tabs.I never knew that it could be the Hydroxy. As my gastric symptoms haven't improved I am now being sent for a gastroscopy!

[Arnoldthecat in reply to Pippapot]

Well, i have never suffered with constipation in my life so i doubt it's coincidence. Yes, i too have been getting stomach pain and reflux.

[Hombre]

Hi Arnold, I contacted Prof Harrison's secretary by email and shortly afterwards received an email reply from Prof Harrison. In due course I had a telephone conversation with her, and was subsequently referred by my GP. This was followed by a blood test at St Thomas's, followed up by a telephone call with one of her team. At present I have no need for further consultations.All the best!

[Cokopops]

Hi. Have you tried probiotics? Like kefir, sauerkraut, Symprove etc. It does help with tummy problems. I’m on 6000 Hydroxycarbamide a week ( just been increased again) and it does take a few weeks for you body to get use to it all. But I found that taking probiotics helped a lot. Worth a try. Good luck 🤞

[Arnoldthecat in reply to Cokopops]

No, i haven't. Thanks for the advice.

[ciye]

I have had 2 phone consultations she is lovely. I live in Southampton and she thought it was to far to travel.

[Arnoldthecat in reply to ciye]

Thanks for that. I am in Gloucester, so probably about the same distance.

[Lisat35]

hi, I originally saw a private consultant but didn’t get on with her so asked for a referral to prof Harrison. This was in 2018. I waited 6 months for a face to face and she was so reassuring. I then went under my local hospital. Unfortunately I was very ill in sept 2019, I had an arterial blood clot, stroke and heart attack, the latter 2 on a flight from LA. I was admitted to my local hospital for 4 weeks and on discharge had an appointment arranged for me w/prof Harrison. Again she was excellent and arranged for a PET scan for me. After 2 further appointments with her team I was discharged and am now with my local team. I take 500mg 5 days a week, 1000 2 days a week along with warfarin, aspirin and lanzopropole. I find the latter seems to help with any tummy issues. I’m just about to start symprove probiotic. My count runs at around 450 currently and this balance seems to work as it keeps my red and white cells balanced. Best wishes

[Lasbrisas1]

Now reporting my Specialist to PALS, HE WILL NOT EVEN ANSWER MY DRS EMAILS...3 MONTHS NOW, PLUS TOOK HIM 8 MONTHS TO TELL ME I HAD JAK 2 GENE....