Hi all, update on marsked PVYesterday had the first appointment at Guys, wow the difference in approach is palpable!!!
After developing neuropathy in both hands and feet Peg had been paused at the end of April (45mg).I have a degenerative spine and rheumatoid arthritis so it's not clear why this has happened ,it could be the editor an arthritis flare and the nerves in the back having a party!! Neuro referral in.
Guys are redoing all genetics( including some not originally done).Amazed that there doing this so quickly after the cyber attack.
After the examination( never had before) spleen found to.be enlarged.
Full history taken ,including family my sister was with and asked about .hers.
Agreed to ultra sound and BMB in the next couple of weeks at Guys.
Results due in about 8 weeks . If its PV switching to Rux. My comment to anyone out there that doesn't see an MPN specialist is get a request in for that second opinion, the care is completely different.
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Spanelmad
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Thank you for sharing. I'm sorry to hear you're suffering with arthritis and neuropathy in your hands, but so pleased you've been seen by the team at Guys. So happy to hear they are looking into everything for you. I hope BMB goes comfortably for you.
Glad to hear you had such a positive experience with a MPN Specialist at Guys. This is all the more important when you have co-occurring conditions that complicate things.
I'm not really surprised at all that you've seen a large [positive] contrast.
Best of luck with all of that.
Don't be too concerned re: splenomegaly finding- this is one place where the imaging is way more definitive than the physical exam.
Also- have you had any symptoms of the purported spleen enlargement? Early satiety, abdominal fullness, abdominal pain- especially in left upper quadrant?
God bless - keep us informed, and keep breathing [deeply]!
Hi PA, no saiety as such, but I've been changing my diet and have lost a stone recently.But it's as you've described a fullness around the middle with a little pain.As you.say still.breathing just worn out.Hope your doing ok
May we assume that you meant satiety [as in feeling full with minimal oral intake] , because I do hope you're safe.
You comment about losing a stone had me feeling sympathy for the pain you must have gone through in passing it [as in kidney stone or gallstones]- and then i realized that meant it as a unit of mass/weight. 😄
I have been OK, thank you for asking.
My Hct was, but is not currently being compliant to the goal of <45 % [instead i has been solidly 49 % despite phlebotomy], but my WBC and platelets have been really well-controlled- almost too low in fact. I'm planning to request a f/up of my allele burden test and abdominal U/S to see if there has been any budge in those parameters in my 2 years+ since diagnosis, and nearly 2 years of INF treatment.
Weight loss [especially if it's unintentional] can also be a symptom of SMG [splenomegaly] I think because patients start to eat less without really realizing that specific symptom of fullness as representing a degree of early satiety.
Quote: "The most common physical symptom associated with splenomegaly is vague abdominal discomfort. Patients may complain of pain in the left upper abdomen or referred pain in the left shoulder. Abdominal bloating, distended abdomen, anorexia, and/or early satiety may also occur."
BTW, apropos of my breathing comment- dyspnea/shortness of breath out of the ordinary can also be present as a consequence of restriction of diaphragmatic excursion- i.e., it's harder to take a full deep breath.
Regardless, hang in there and trust the process [especially since you're in better hands now. 😇
Ok I see take the ! with the "brit", sorry no kg here!!! Yes it's vague pain and the weight loss all though trying to, is more than expected.Had a full exam of lungs during the appointment but they were concerned that respiratory have not scheduled follow up since the bilateral PE.So more appointments to look forward to!
The breathing hasn't really got back to normal.Although found this morning that I could sing along to the radio without turning bright red.
I'm in the US, so for us it's pounds, not Kg's- and thus there would be a chance that you might think we meant money, and not weight- it's a weird world we live on.
I'm being careful [about infection], but [hopefully] my WBC's won't get quite that low.
I'm glad to hear your breathing has made some progress at least.
Has the neuropathy improved at all? As for the Alendronic acid that's standard for osteoporosis and they should do follow up dexa scans at some point.Interesting thought about the OA, mine is definitely worse since starting PEG.
Hope your not feeling too bad .Sacrum pain is the worst.
Yes ,the neuropathy disappeared completely in a couple of weeks after stopping Peg
I think a more graduated exercise programme,should help the other joint ‘rubbish’ going on ,which at my age ,63, is a common occurrence
I don’t think the Peg particularly caused an increase in my joint pain.
Perhaps the nature of the Jak 2 PV ‘ driving ‘effect on the bone marrow over the last 10years,plus repeated venesections,(which may increase the RBC production over time),affects bone health etc?
Anyway ,forever onward…let’s all try and keep moving as much as possible,within our capabilities ,in a sensible way,ie no over exercising!!
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