PV and gout?

[sbs_patient]

I've been having some gout-like toe pain lately, and I've just learned that my serum uric acid is high, so I'm presuming that the pain is coming from the deposition of uric acid crystals in joints. I understand that the high turnover of red blood cells in PV can lead to raised serum uric acid levels. In this context, what's the best approach? I'm concerned that the usual gout medications (colchicine, allopurinol) have serious side effects and will interact with other medications I'm taking.

[Barbiebreath]

I also get this on occasion. High fructose corn syrup will give me a flare up. Specifically “Sour Patch Kids “candy! I read that glutathione works as well as the prescription medication for gout. I take a supplement everyday and I seldom get them now.

[sbs_patient in reply to Barbiebreath]

Thanks for the advice. So far, it hasn't been so bad, but I'm keeping an eye on it.

[hunter5582]

It really depends on what the source of the pain in the toes is. Microvascular pain is common with PV, presenting like erythromelalgia. You may get some swelling and mild redness shy of what erythromelalgia can look like. This is a classic PV symptom. I did experience this when I was off of aspirin. Going back on aspirin fixed it immediately.

Do note that paresthesia are also associated with PV. A neurological cause is also worth exploring.

If I recall correctly, you are on hydroxycarbamide. Sorry if my memory is incorrect. Do be aware that HU can cause renal impairment which can lead to increased levels of uric acid and gout. In addition, hydroxy can cause peripheral neuropathy.

Pain is a warning sign that something is wrong. There are a number of things that could be the cause of what you are describing. Getting to the root cause is the only way to correct the issue. Suggest starting with MPN Specialist wo is familiar with PV symptoms and medication adverse effects. This is definitely not something to just ignore.

Hope you get tis resolved ASAP.

[ETyears in reply to hunter5582]

Use the allopurinol won't affect the system neither will colchicine , I am on Interferon and take these two medications the damage from the gout will far outweigh the 2 medications.

[sbs_patient in reply to hunter5582]

Thanks for your thoughtful and extensive comments. Actually, I went off aspirin for a few days in anticipation of phlebotomy (which wasn't needed this time), and the pain followed. It's much better now, but I hadn't associated the relief with going back on aspirin.

I've had paresthesia for some years now - first in left toes, then right toes, now moving to balls of feet. Back when it started, I had a neurological exam that turned up nothing.

I am on 500 mg of HU, three times weekly. Thanks for the indication that this may link to renal disease. Blood work over the past few years has shown on-and-off signs of CKD. However, I saw a recent European paper reporting a meta-study associating CKD with MPN. Note: correlation, not causation!

Interestingly, approximately since the time I went off heavy doses of HU due to serious skin reactions, my blood counts started to rise and have stayed high for the past 18 months, while HCT has remained normal or slightly elevated. For example, my latest counts are WBC 27.26, RBC 5.69, PLT 719, HCT 44.5. My local hematologist didn't seem bothered, but I'll be pursuing this at UPenn when I go there.

I'm glad to hear that you are pleased with your new JHU MPN specialist. I'll be seeing my new specialist at UPenn in early August.

Thanks again for all the advice.

[hunter5582 in reply to sbs_patient]

Glad to hear you will be seeing the new MPN Specialist soon. Please do let us know how the new doc/clinic works out.

Regarding the pain in your toes/feet - the diminished symptoms when you went back on aspirin might be a clue. It only takes 40.5mg/day for the symptom to resolve for me, however, some people need 81mg 2x/day to deal with microvascular issues. While HU can help with microvascular symptoms, it sounds like you may not be able to tolerate more HU. Fortunately, there are other options.

I expect you already know that Jakafi and Besremi are the only two meds FDA-approved in the USA for PV. Perhaps one of these will be more effective and easier to tolerate. I found that Pegasys/Besremi worked much better than HU and were far easier to tolerate We are, of course, all different in how we respond to all of these meds.

I also had to be evaluated for possible CKD. Turns out no CKD, just older-weaker kidneys. Rx = drink more water. That is a good idea anyway when you have PV and/or take medications that are nephrotoxic.

All the best my friend.

[sbs_patient in reply to hunter5582]

I will be going to Philadelphia to consult with Dr. Luger on Tuesday. I'm hoping to get some insight into the progression and likely evolution of my PV. I'm glad that the interferons (Pegasus/Besremi) are working for you. However, I am concerned about the. increased cost involved with moving from HU to Jakafi or one of the interferons. I am currently using a Medicare Advantage plan; as far as I can tell, all of the plans offered in my area have similar charges for the three newer drugs. From what I can see, all start at a very high level ($1300/mo for Pegasys, $3100/mo for Jakafi, $2000/mo for Besremi) but are eventually lowered by the various Medicare drug coverage cutoffs. These are serious outlays!

[hunter5582 in reply to sbs_patient]

On my Medicare Part D plan, I am responsible for a set co-pay for the higher-tier drugs of $100.00/month, until I reach an annual ap of $2000.00. There is no difference in my cost between Pegasys, Besremi or Jakafi even though these meds vary significantly in price. HU cost me $7.00/month in comparison when I was on it.

The approximate monthly total cost per med is:

Hydroxyurea (60 tab) - $25.00 - note used to be $80.00.

Jakafi (60 tab) - $14,308.00

Pegasys (4 prefilled syringes) - $4,177.00

Besremi (2 prefilled syringes) - $14,088.00

Do note that some insurance plans are able to negotiate different prices, but these prices should be roughly equivalent. It sounds like you are on a 70/30% Part D plan. Hopefully you have a manageable cap on your out of pocket expenses. Otherwise the cost of some of these meds would be prohibitive.

Some of the manufacturers have patient assistance programs that my be worth looking into. I did not look into these as I did not need them. Do note that getting authorization for a more expensive medication like Besremi can be a challenge. In comparison, I had no trouble with authorization for Pegasys. Hu was of course no problem at all.

Wishing you success in finding the right care plan for yourself.

[sbs_patient in reply to hunter5582]

That's an impressive plan! Am I right in guessing that it's government- or military-related? My current plan uses 33/67 for Tier 5. I will also take a look at standalone Medicare Part D plans. Unfortunately, the Medicare cost calculator is limited to the current year, and it assumes you're starting right now. For more accurate estimates and comparisons, I'll have to wait until much later in the year.

That being said, HU doesn't cost me anything under my current plan, since 90-day mail order for Tier 2 is currently free.

[hunter5582 in reply to sbs_patient]

Correct on the first guess. I am a retiree from Fairfax County and have an employer sponsored plan. I am very aware of how fortunate I am to have this plan, which I can keep for the rest of my life. I do get annoyed at times as the formulary when you move to Medicare is not as good as the formulary when you are not on Medicare. In addition, my insurance package costs more being on Medicare due to the IRMAA income penalty. Oh well, it is still well worth it as it is much cheaper than other options with all the meds and medical care I need. Besremi is a non-formulary med still and I have two other high-tier meds. I always reach my $2,000 cap since I start out at a base of $300/month just for those three meds.

Definitely very fortunate to have the plan that I have. It is unfortunate that it is so difficult to get better coverage for so many people. Perhaps someday they will actually fix the system.

[sbs_patient in reply to hunter5582]

I can't actually imagine our health "system" ever being fixed, since there are too many interests that prefer to keep it in place.

Interestingly, I lived in Fairfax County for a long time, many years ago when I was a faculty member at GMU. Since I left there in 1990, I've moved around quite a bit and thus never qualified for an emploment-based retiree health program.

[hunter5582 in reply to sbs_patient]

What a coincidence. I grew up in Fairfax County and got both my Bachelor's (1977) and Master's (1980) degrees from GMU. It is quite a different place than when I started there in 1973.

[sbs_patient in reply to hunter5582]

It is indeed quite a coincidence. I came there as a .faculty member in 1972 and was there until 1990.. Yes, GMU is nothing like what it was back in the 1970s. When I first showed my wife the campus in the spring of 1972, she said something like "Is this all of it?".

[hunter5582 in reply to sbs_patient]

I think it was a total of 6 buildings then and fewer than 4000 students. The Psychology faculty was quite small back then. We had a number of part-time faculty who were full-time clinicians. Some really good full-time professors too. The last time I was on the campus it was hardly recognizable as the same place.

[sbs_patient in reply to hunter5582]

I went to see Selina Luger at UPenn earlier this week. She's clearly very knowledgeable about PV, and took her time going over my story and current symptoms. In the end, she said that my symptoms were significant but not alarming. She also said that HU is not controlling my disease and that I need to move on to ruxolitnib. The next step is got a prescription, get approved for this Tier 5 medication and do my best to minimize costs.

[hunter5582 in reply to sbs_patient]

That sounds really good. Glad to hear that you found a good new MPN Specialist. It also sounds like a good move on the treatment plan. Hope the funding works out.

Incyte has a patient assistance program. I have never looked into it but you may find it helpful. Here is the link.

incytecares.com/oncology-he...

All the best my friend.

[Uzza]

Hi sbs...diet is also important. Stay off purine-rich foods such as red meats, especially processed forms. Field mushrooms are a no-no too.

Cheers

Uz

[sbs_patient in reply to Uzza]

Liz,

Thanks for the advice. Field mushrooms are hard to find in US shops and I wouldn't dare pick them from the wild. If they were available, it might be hard to cut them out

[Fika500]

Allopurinol worked very well for my husband with no adverse side effects. The dose had to be increased after a while . You start taking it a few weeks after a flare up . Best to see your MPN specialist - my husband’s specialist asked the GP to prescribe it. Uric acid tests were done when necessary along with his usual blood tests at haematology clinic .

[sbs_patient]

Thanks for the additional context.

[Swim360]

Hi sbs, my PV diagnosis came about following a routine blood test for gout. I was completely unaware that this was a symptom. Because of my dangerously high red blood cells I was give hydroxy, 75mg aspirin combined with venesections along with allopurinol for the gout. After 10 weeks bloods are near normal and I have no gout attacks. I am looking to come off the allopurinol following my next consultation in six weeks. I haven’t experienced any side affects apart from fatigue in the afternoons which will hopefully ease not sure if this PV related or drug related

[sbs_patient in reply to Swim360]

It sounds like your diagnosis was recent; mine was back in 2015. Initial symptoms were heavy nosebleeds, high blood pressure, and gouty pains in toes. Blood work revealed high RBC; this led to a hematology consult and a test for the JAK2V617F mutation. I've been treated with phlebotomy and HU. My concern about allopurinol is its interaction with other medications I'm taking.

[Swim360 in reply to sbs_patient]

Hi Yes recent diagnosis just wanted to confirm that for me taking allopurinol with hydroxy has been fine, and the gout has gone. I hope you get it resolved

[Brendaf]

Hi I’m suffering from this painful gout at the moment and also taking allupurinol I have chronic neutrophilic leukaemia and taking Asprin as well hoping this will ease shortly. Have had this on numerous occasions and can last days but sometimes weeks.

[sbs_patient]

Thanks for your reply. I hope that allopurinol will deal with the painful episodes.