Having stopped HU on the instructions of A&E and my Haemo still insisting that breathing problems not caused by HU I requested GP to refer me to Dr Claire Harrison and yesterday I had a telephone appointment with her. What a lovely conversation. She acknowledged that HU was not agreeing with me obviously concerned that I was on no meds only Aspirin and outlined options of alternative meds. It was agreed that Ruxolitinib would be the best. She would arrange it and it would take about 2 weeks.
What a wonderful hassle free appointment I can't belive it was so easy.
Just had a text msg with a follow up appt on 27 April. Sun is shining lock down ended can't believe my luck.
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That is precisely how all appointments should be. It is the quality of care you deserve and have deserved all along. Providers who do not listen or do not have the KSAs to provide the quality of care you need can and should be replaced.
It sounds like you are on a far better course of treatment with Dr. Harrison. Glad to hear you will be able to maintain this course.
What a battle to get a result. It took the senior GP of my medical practice to phone the head of Haematology to get agreement that I should stop HU he said immediately otherwise the toxins could damage the heart. Scary. I'm so glad I asked to be referred to Dr Harrison. Many thanks for your kind thoughts.
I am very glad to hear that you are getting proper care with Dr. Harrison now. I am hoping that your MPN care will be formally switched over to her practice and you can no longer have to deal with the old hematology department that does not seem able to provide you with the kind of care you need and deserve, All the best going forward.
I don’t live in the UK, but if I did I would certainly check out Dr. Harrison. I have heard so many wonderful things about her on this forum. I’m glad you’re getting everything worked out.
I am happy for you. I am in a similar situation. My hemo has not explained anything or offered any advice for a year. I was just told I have a triple negative MPN and to focus on quality of life, that was it. I had to do my own research and was blindsided. No advice, no explanation. Except take baby aspirin. But they didn’t say how much or frequency...I am checking into Mayo in Rochester next Wednesday. They were awesome on the phone. Even though it is bitter sweet, I truly look forward to visiting with a world class organization and hopefully getting proper advice and or treatment options.
Although my Haemotologist is good I have always said that I discuss things within several forums and many people have the same issue, whatever it maybe.
Happy you had a good consult and are resolving medication issues.
Just curious as to whether or not Dr. Harrison thought breathing problems WERE related to HU? I ask because I've been having shortness of breath with minimal exertion gradually worsening now for over a year.
Hi IrushHiker. As soon as I was told by A&E to stop the medication 9 March my breathing improved. My breathing is now almost back to normal. I had another chest xray last week which still showed a slight shadow which I was told is a toxic build up of HU. As soon as I told Prof Harrison my symptoms she said I was right in stopping it. Not everyone can tolerate it. To hear that was music to my ears. Have you told your Harmo of your breathing problem.
Told my GP who mentioned it to a different Hematologist. The hematologist did not seem to think HU was the cause (I STILL think it is!) I am being referred to a respiratory specialist next.
I think you are right! It is pretty simple really. HU is well known for causing dyspnea. If you have no prior history of shortness of breath and it did not start until on HU for a period of time - it is not rocket science. Sometimes 2 + 2 = 4 .
Here are two examples of HU-induced lung-toxicity, with images
Here are the instructions from memorial Sloan kettering Cancer Center on this topic.
"Some people have had lung problems with this drug. Sometimes, this has been deadly. Call your doctor right away if you have signs of lung problems like shortness of breath or other trouble breathing, cough that is new or worse, or fever."
None of this is to say that HU is definitely the problem. Just that it can be. What is NOT acceptable is for doctors to blow off very reasonable concerns about a know adverse effects.
Thank you for the validation Hunter. I will get this sorted. The problem may be that I have had two CT scans and multiple x-rays and none of them show lung problems to speak of. I will keep "Squeaking till I get my grease" though!
Subtle problems are still problems. Best to nip this in the bud before they can see something on imaging. There are multiple treatment options for treating MPNs. When one med is not viable, then it is wise to switch to another option.
Hunter since stopping HU on 9 March I have had no medication for PV only Aspirin. 3 weeks ago I developed severe pain in my left hip which has now spread across my back and legs. Difficult to walk etc acupuncture helped but didn't last. Is this what is called bone pain caused by bone marrow not functioning and no meds to Lower platelets, or is it buritus. Any thoughts. Hopefully I will have Jakafi on 27 April.
My understanding of MPN bone pain is that it typically involves long bones. I would think it would come on more gradually rather present more like an acute injury. Perhaps someone who has experienced MPN bone pain can address that.
There are multiple reasons for hip pain, that include bursitis as you are thinking. We can also experience elevated uric acid levels that can cause joint problems. We are far more prone to inflammatory issues like osteoarthritis as well. Add to this the things anyone can experience like an acute injury or a pinched nerve.
Here is a list of a few of the potential things the hip pain could be. Which one sounds the most like what you are experiencing?
Bursitis in hip pain
The main symptom of trochanteric bursitis is pain at the point of the hip. The pain usually extends to the outside of the thigh area. In the early stages, the pain is usually described as sharp and intense. Later, the pain may become more of an ache and spread across a larger area of the hip.
"In MPN, the bone marrow expands outward to the long bones and can be seen even out in the fingers and toes when bone marrow scanning is done. The proliferation within the bone marrow cavity may cause pressure inside the bone that, in turn, causes inflammation of the covering of the bone (periostium)."
Elevated uric acid counts are seen in about half of MPD patients during the course of their disease. If untreated, this leads to uric acid stones, uric acid neuropathy, acute gout, and chronic gouty arthritis. Patients may experience joint pain as a result.
"A hip affected by inflammatory arthritis will feel painful and stiff. There are other symptoms, as well: A dull, aching pain in the groin, outer thigh, knee, or buttocks. Pain that is worse in the morning or after sitting or resting for a while, but lessens with activity."
Since you are in pain and it is not getting better on its own - it is time to go see the doctor. This may or may not be related to the MPN. It is best to find out promptly and find relief ASAP. The good news is that it should be pretty easy to figure this out, particularly if it is bursitis or another orthopedic joint issue.
Many thanks Hunter for your very in depth, as usual, comments. The interesting thing is I have raised my Prednisone from 10 to 15 mg assuming it's inflammation but so far no ease. I think I will have to contact my private Rheumy in Chertsey. Thanks once again. You are always so well informed.
That sounds like a good plan. You have likely heard me say it before, but I have had more success with Curcumin for inflammatory joint pain than anything else. Hope you find something that works for you.
I have read both of Hunter's articles and my case was the same. No breathing problems prior to Hydroxycarbamide and xrays of lungs showed ground glass and inflammation. Haematologist adamant not caused by HU. Admitted to A&E couldn't breath. HU stopped. I asked my GP to refer me for a second opinion to Prof Harrison at Guy's who agreed not everyone was tolerant to HU and was correct to stop it. Now waiting for Jakafi hopefully 27 April.
Happy you found someone who listened to you and acted upon it!
So far my x-rays and CT scans have been clear but my symptoms are slowly worsening. I have zero history of lung problems and never smoked. I emailed the reply from Hunter along with attachments to my GP. Slowly moving towards a solution to my problem.
I had to get my GP to take action for me and make the referral. You have to be strong and not to be pushed over by the haematologist who in my case is not a specialist in MPN. Good luck.
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