Two Questions

[Hereforalongtime]

Has anyone else here suffered weight loss as a symptom of their PV and have been struggling to gain it back? Also, I have been diagnosed in my 20’s and can’t seem to let this disease stop controlling me from living my life and making me really anxious. I want to put it in the back of my mind, but then some of the symptoms I keep having just keep reminding me of it. The most troublesome is the paresthesias in my feet. suggestions?

[KLCTJC]

I feel the same way! Of course I have had other heath issues on top of having PV! I was diagnosed at 38. Now everything scares me. I think I drive my family crazy. But I feel the same way once I get past it something reminds me I have it. I have had issues gaining weight and was steadily losing until about a month or two ago. I was put on Besremi and for the first time I saw improvement. I think just knowing I was doing something helps. I have the feet issue after standing all day but as I said I found out I had MS almost a year ago too. I bet yours is anxiety related. I get it! But since being on Besremi hoping it will treat both has helped. I was able to gain weight and I feel good. Yoga 3-5xs a week and I ride my Peloton bike 2-3xs a week. I also take something to help me sleep. Not sure if this helps but you are not alone.

[Nrl303 in reply to KLCTJC]

how had besremi been working for you? I’ve been thinking about trying it

[KLCTJC in reply to Nrl303]

has made a huge difference. I started it in February, but it really has been more like March after I got past loading doses. In the last month I have noticed a huge change in my health. I feel great! Best I have felt in years. I have to attribute some of it to Besremi. It has been an amazing change. I can’t explain it, but I am going with it. Whether it is the medication or placebo it really doesn’t matter. I am trying to change my attitude which is so hard for me as I am a pessimist by nature, but everything Hunter said is true and good rules to live by. I try not to wait to do anything. If I want to do it, I do it. I really hope this helps.

[Nrl303 in reply to KLCTJC]

That’s great to hear. Have you noticed a decrease in the PV symptoms?

[KLCTJC in reply to Nrl303]

My symptoms from PV were only when I first found out I had it. Which was dizziness and migranes. Since I did the first phlebotomy I haven’t really had any symptoms. I get tired which I think has improved, but I work, have a 4 year old, etc. I have never had itchiness or anything I could really relate to PV. If I wake up and I feel good I try to focus on that and like Hunter said, just go with it.

[Nrl303 in reply to KLCTJC]

It really is interesting how this disease seems to affect mostly everyone differently. I’ve never had headaches that last or any dizziness, but the only symptom I’ve had is numbness in my feet & sometimes hands that can get quite scary & also annoying. Praying medication can solve that problem. I’m trying to get on Besremi, as I am young and know that’s the best treatment as long as I can tolerate it

[KLCTJC in reply to Nrl303]

I agree. I would definitely try and see if you can get on Besremi. Hopefully it will help!

[hunter5582]

The issues in the feet can be bothersome. If what you are experiencing is the burning tingling type pain (sometimes with slight swelling redness) - that is a PV microvascular symptom. My doc calls it "PV Toes." It is quite annoying when it occurs. What worked for me was an appropriate dose of aspirin. Some find that they need more the one low-dose aspirin per day. Aspirin has a very short half-life so twice a day works better for some people.

Ensuring stable control of erythrocytosis can also be helpful. One of the issues with venesections is the variability in blood viscosity as the erythrocytosis rises and falls. As KLCTJC suggests, cytoreductive therapy like Besremi can be very helpful. I am also taking Besremi and it is working well at a low dose. My quality of life has improved significantly.

I have found that trying to "not think" about something does not work well. It takes a lot of energy to "not think" and it just makes you actually think about it more. My approach is to actively and intentionally think about the PV when I need to or want to. I stay busy with work and fun. If something happens to remind me of the PV, I just go with the flow, deal with it, and move on to the next thing. Having a set of coping strategies really helps. We all need to develop our own set of strategies. This is my list.

1. Support from my family, friends, and faith community.

2. The MPN forums (my friends and MPN Family)

3. Maintain your sense of humor and find ways to have fun no matter what.

4. Surround yourself with things that are positive and lift you up.

5. Mindfulness practices - I practice Qigong.

6. Say the Serenity Prayer every day and take it to heart!

7. Educate yourself about your condition(s). Knowledge is power.

8. Create a high-quality treatment team who you trust.

9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.

Wishing you all the best as you move forward.