I am 71, have had PV (exon 12) for about 4 years, been on pegasys for 3 years. Presently apparently in CHR, with maintenance dose of pegasys 45 mcg every other week. Generally it has been going well.
However, last christmas, my wife and myself (my sons as well to a lesser extent) apparently got infected by a dog myte from our dying dog. Although nothing was confirmed, it was apparently "cheyletiellosis - walking dandruff" that dogs can get somehow and in some instances may affect humans. My wife and myself got pretty awful rashes and went through a whole body treatment that killed the mytes. We were immediately much better after treatment but there were lingering effects including periodic flareups of rashes which the dermatologist gave us a steroidal skin treatment that you lather on your affected body parts. Its taken months but we are doing better - I haven't used the steroids for more than a month. But now I have sores that apparently started as rash - maybe 10 of these mostly on my feet with a few on my legs. They seem to have gotten worse in the last few weeks. My wife does not have these sores although she occasional has some rash effects.
I saw my MPN doctor and he thought it was possible that these sores have somehow been exacerbated by pegasys (which is an immune booster). He recommended that I define my allele burden and then if it is very low, then we would consider a "pegasys vacation", which apparently is possible to do if the mutation has been severly reduced. I am now trying to get prior approval to do next generation sequencing (expensive - needed for exon 12) and which they denied - nothing is easy. I expect I can get it approved on appeal since it is so reasonable and documented as important in treatment of PV.
My question is whether anyone has had something like this with pegasys or has any insights that might help. I see dermatologist tomorrow to try to come up with treatment plan. I'm pretty sure I will take the pegasys vacation once I get my approvals and hope that helps with these sores.
My best to everyone...
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gvibes
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I did/do get some mild rashes with Pegasys and Besremi. They have been very mild and well controlled with a daily dose of Zyrtec.
There are multiple types of tests that can be done to evaluate the JAK2. Here is a list from Labcorp. labcorp.com/search?query=JAK2 Perhaps where one was denied another would be approved. The important thing to note is that "NO" does not mean "NO" when it comes to insurance companies. "NO" mean that you have to know how to appeal the decision. It is important to note that just because your provider could not get it approved does not mean the end to the process. A patient initiated appeal can succeed where a provider appeal cannot. In fact, an appeal initiated by the patient has greater legal weight than an appeal done by a medical provider. I have twice been able to get things approved by filing my own appeal when my providers were unable to get an authorization.
Filing your own appeal requires that you do some research. You will need to find the plan rules (plan guidelines) that are used for your specific insurance plan. You will also need to find the rules for a patient initiated appeal. When you file the appeal, you are alleging a wrongful decision that is in violation of the contract with the insurance company. There is a very specific skill set in how to go about filing your own appeal. Some people choose to hire a patient Advocate to assist with this. These professionals specialize in helping people access medical care. Here are two lists if you are interested.
You also have the ability to pay out-of-pocket for the test to be done. Costs range from $600 - $1,200 from what I have seen. You can call around to the major labs (LabCorp, Quest, Mayo) and get prices. Prices do vary by lab and by which test is selected.
For what it is worth, I would certainly consider a Pegasys holiday in this situation. I would also consider a switch to Jakafi. It is worth noting that JAK inhibitors are used to treat a variety of skin conditions. That would be something to discuss with your care team for the best feedback.
Thanks Hunter, good advice. I was planning to do appeal myself but getting rules makes sense. The cost last time for Next Generation Sequencing was more like $3500 to $4000. If I could get it done for the $600 to $1200 then I might just pay for it. One question - now that they know my specific mutation (......p.F537_K539delinsL) and the quantification would just be that mutation, does the test become simpler and less expensive? I'm seeing dermatologist in an hour and see where we go from here. I will go down the rabbit hole of our insurance system.....
I believe that is one of the known JAK2 Exon 12 mutations. Presumably one of the broader JAK quantitative panels would pick it up and measure it. Here are two examples.
I would not make any assumptions and be sure to select a test that will give the desired response. Checking with the labs would be a good idea. You could find out cost at the same time. The cost on NGS testing has dropped. The cost also varies quite widely by lab and specific test ordered.
You are right about the insurance rabbit hole. It is a dark and twisty tunnel. When you call, you will speak with a "Patient Navigator" who may or may not be willing to help you find the Plan Rules. Note that while their job is ostensibly to help patients, they work for the insurance company, not you. Facilitating appeals can meet with some passive resistance. It is essential to be persistent, including speaking to a supervisor if someone is unable to help. Note that some plans do have the rules posted on their website, but this is not always done.
I have had PV for 15 years and happily took 1000mgs hydroxicarbamide daily. I m 70.
This was stopped 3 months ago ( skin probs) and replaced with pegasys. 90ml once a week.
Initially this seemed to be fine but as time has gone on I have developed quite severe muscle and bone pain., dreadful constipation and fatigue.
My haemo ( a very experienced Mpn Professor who I trust implicitly) admitted me me to hospital suggesting it could be a pulmonary embolism . I think it’s interferon side effects.
If you google side effects peg interferon a rash is mentioned along with side effects I have mentioned. My platelets are also quite high so wondering if this connected? 780.
thanks Louise. Interesting... My platelets have always been low normal like 150 to 250. The version of PV I have only seems to affect my red cell concentrations - whites and platelets are normal.
Hope you are soon better Louise,my platelets are just 80!I am M F now & all bloods are low…..just wonder what next! Keep strong ,sending Best Love & wishes for speedy recovery from very hot France,another prob for me,need rainy cool U K🥰Sally
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