Hello, all. Last week I developed a bad sore throat and headaches. Two days into it, I went to urgent care and they said my throat wasn’t even red and did a strep test which was negative, but my glands were swollen. I have no fever, cough, or sneezing but it’s been almost a week now and I am wiped out. My throat feels better but my headaches are getting worse. I’m taking Hydrea and my hemo just increased my jakafi a little over a month ago. Does anyone have any opinions on this? My symptoms just seem really confusing.
Immune system compromised?: Hello, all. Last week... - MPN Voice
Hi Cja, sorry to hear you are under the weather. I had a spell from nov last year until beginning March when I had constant sore throats, swollen glands, coughing, etc and kept getting told it was a virus. I upped my intake of vit C and eventually I got better but was shattered all the time.
The vitamins might be worth a try but ask your gp first. Otherwise I think you have to give in and rest more and drink plenty of fluids. Hope things improve soon. Sending you E hugs . Kindest regards Aimexx😺😺💐
Thanks so much for your reply. I’m glad you’re feeling better but I can’t believe it lasted so long. Urgent care told me to see an ENT doctor but I first have to see my gp to get a referral. I do take vitamins every day and also increased my Vitamin C. Thanks again for your support. I will try to “give in” and allow it to take its course, but I hate feeling this way.
Hello Aime. So sorry to hear you have had this debilitating virus, haven't seen many posts from you so I was a bit concerned ..
I do hope you are getting back to better health. It's very frustrating when these bouts of various energy sapping coughs etc.rear their ugly heads. Interesting that your Vit C appeared to help.
Some blue skies and warmth are what we need ( but not too hot )!!!!!
Take care . Love Sandy xxx
Hi Sandy, thank you so much for your concern. I’ve been struggling a bit with my osteoarthritis, not my red blood cells! My feet are very sore, going back and fore to a podiatrist and now my shoulder, which has had 3 ops is playing up again but I’m still enjoying my grandkids and life very much.xx😻😻. Coughs, viruses, etc seem to be conquered for the moment, fingers crossed.
Hope you are as well as you can be. Summer is coming, flowers are blooming and birds are tweeting very loudly, I’m lucky to have a wonderful family. Kindest regards Aime xx😻😻🌹🥀🌷🌸💐🌻
Yes Aime, spring is trying to get going , we have a bitter wind here today. I live in south Devon, so hope it warms up for those here on holiday. As you say the birds have been cheery and vocal , so lovely , and the flowers are really starting to add colour . We do have a lot to be thankful for.
Take care . Love Sandy xx☀️
From my experience Hydrea is a very ‘heaty’ drug because it’s urea-based. I could hardly eat anything ‘heaty’, pungent or spicy after I started with it and I can easily get an infection due to the heat.
Each day I cool myself down by drinking lots of a cooling herbal drink called loh han guo or coconut juice or even a beer. Not sure if this can help but you can try cooling yourself down a bit.
I am on Jakafi only which has been increased twice so far this year. My glands have always gotten sore off and on since I have been on this medication, no fevers. And with each increase, I get side effects such as migraine aura, tinnitus, brain fog but they do subside.
I just treat my side effects as they come and go and always inform my dr. of them.
If anything was bad enough then I definitely would go to the ER.
Hope all is well.
Good morning, Alexandria, your comments are very interesting because I am getting this “whooshing’ sounds in my eat, as well. So we are experiencing all the same symptoms, it seems. Does your Dr say it’s from the Jakafi? Mine was increased from 10 mg to 20 mg per day about 6 weeks ago.
Anyway, I’m glad to hear that they have subsided. It gives me hope that mine will, too.
I have the ringing in the ears and sometimes a low “hum”. These side effects are listed for Jakafi and I experienced them after starting Jakafi, except for headaches which I’ve always had.
The headaches got less when I started have phlebotomies when diagnosed in 2016 but the migraine auras increased for a bit after upping the Jakafi.
But, they have decreased lately.
20mg to 25mg
I didn’t know the “whooshing” sounds In my ear was listed as a side effect of Jakafi. I’m actually comforted by that. I also have anemia which I read can also cause tinnitus. It has to do with blood flow, I think. Believe it or not, I’ve never had a phlebotomy. I think because the Jakafi reduced my red blood cells so much , my doctor has never done one. I guess I still have to give my body a little more time to adjust to the increase in Jakafi. Thanks again. I appreciate you taking the time to respond to me.
You are welcome. I’ve read where tinnitus is referred to as all those ear sounds, not just ringing but makes since to me.
My dr. started me on phlebotomy and aspirin only in the beginning and hoping that would be all needed.
But, I was needing the phlebs too often and anemia became a problem and all that comes with it.
So, started with the meds last year and hoping for the best...and a CURE.
HU is immunosuppressant. Jakafi is as well. Being a new drug, it may be docs/GPs are not as aware of this. Even if you do not have strep, there are all sorts of other infections, viral-bacterial-fungal that could account for your symptoms. Be sure to let your hematologist know what you are experiencing. They should be closely monitoring your blood cell levels. Perhaps there has been a dip in neutrophil (or other white cell) levels. Chemotherapy is always a balancing act between the benefits and side effects/toxicity. Being the fulcrum for the balance is not always a ton of fun. All the best to you. Hope you get it figured out with your hematologist.
Thank you, Hunter, for your reply. It is really good advice. Ironically, I was going to my hematologist a lot in the past two or three months before I got my sore throat because my platelets were increasing and my red blood cells were decreasing and I was feeling awful. My last visit my platelets finally came down and out of the danger zone. He told me to come back in six weeks. I felt like the Jakafi was helping in the beginning. I’m going to my primary care doctor on Wednesday and see if I can get another referral. Thanks again.
Wow, a fellow Floridian! Yes Jakafi seems to have so many side effects. I resisted taking it for a couple of years because I was already on hydroxyurea and I was working and I couldn’t handle the side effects. But my doctor told me about 9 months ago I had no choice and and he put me on 10 mgs, 15 and now 20. I guess I just have to try to adjust to these side effects.
When did you start Jakafi and how are you doing now?
Yay! Someone else on Jakafi! I was put on it 8 months ago after the Hydrea for I could not handle the side effects. Only problem is, with the Jakafi, a side effect are UTIs, which I have had many of, which lead to kidney stone. I just had one blasted and recovering. I have had the migraine auras as well as the stiffness in Neck, but goes away when I take my migraine med, maxalt.
I’m going to try to go back to work..three days a week for 6 hours. Hope my energy levels stay up!
Just a quick question, I have been on 10 mg twice a day, do you take the 20 mg twice a day?
Hugs and best wishes as we all move forward...
I’m so sorry you are having all these difficulties. I haven’t read that Jakafi causes UTIs or kidney stones. I do have a stiff neck and bad headaches that seem to come out of nowhere since my doctor increased my dosage. I also take 1000 mg of hydroxyurea. And the Jakavi I take 20 mg per day, 10 in the morning and 10 at night. I am self-employed and I have also had to reduce my hours considerably. This disease really takes a toll on your energy level.
Best wishes to you, as well. I hope it goes well for you at work.
Yes, the disease can take a toll on your day-to-day abilities to get anything done. I wish that could give us something to help our energy level. It eat very healthy and try to get my energy up by walking and mild exercise, but it hasn’t helped me much. Everyone says “you look great” and that is tough because I don’t feel well.
I have no idea clinically whether an MPN or drugs given to stabilise are the cause of your recurrent illness. The only drug I take for my PRV is Aspirin... my PRV treatment is venesection - I take a lot of other drugs due to high BP and SVT (which I'm convinced are due to PRV)
The only thing I can confirm is that before PRV I was fit, healthy and rarely visited my GP. Take a look at my GP notes a few years before and since diagnosis and there is a sharp contrast - I'm always at my Doctors now - A common cold which turns into a chest/ear infection... a grazed knee from a fall becomes infected and doesn't heal. There have been so many GP visits over the years that I truly believe that more has to done to address the symptoms of an MPN before drugs are added to the equation.
I agree with some of what you’re saying. Sometimes it’s difficult to know whether it’s the illness or the drugs that are causing your symptoms. But I do know that Jakafi has contributed to some of my most recent issues. And after being on this forum for the last couple of months, I think my hematologist maybe over medicated me at the beginning. But that was 11 years ago and I’m still with him. So in the long run, he’s been good.
I really hope that things improve for you. .Do you take vitamins and keep hydrated? Are you eating a healthy diet? When you have the energy, do you try to do light exercise?
Best wishes for good health.
All the vit C, etc. Tips are good. There is one thing that some people have. A bout of Lyme shows up in people, who don’t know they have it. About 80% of Americans and Austrians do. I’m not sure about England. The symptoms are like a fever and sore throat without the redness or fever. Antibiotics help but weaken the body, anti inflammatories also. My husband gets this every few years. This time I recognized it and treated him naturally with 1,5 g of buffered vit C every 2.5 hours, 2 drops Oregano oil in tbsp of coconut oil am and pm and strong tea from fresh ginger, cinnamon stick and lots of cloves (1.5 Liters water) simmered for 15 minutes and drunk with honey throughout the day. It took a little longer to get rid of, but he didn’t have the repercussions of antibiotics. Immune system got strengthened too. I’ve been trying to not put any more chemicals in my body since I was diagnosed with ET 18 nonths ago. My family followed! By the way, this worked on my daughters bronchitis too! Hope you feel better soon. : )
Thanks. I’m taking 4 x 0,5mg Anagrelid daily. I don’t do 2 and 2 because it bothers my heart. I try to stay as clean as possible with organic foods, make almost all my own cosmetics, creams and cleaning products. It’s made a huge difference in my well-being. I am sure that if the immune system is reset, it will help my body help itself more and more. I’ve been on this immune trip since Oct. 2017 and I’m planning on 2.5- 3.0 more years to get all almagams and root canals out and continued detox etc. The first two almalgams are getting changed tomorrow. I finally found the right doctor to do it safely. Cheers
It is complicated, but I took step at a time. I bought a second fridge and do cooking days twice a month. I fill up jars with soups, make schnitzels, jars of cooked veggies. It works. I’ve gone from 6 Anagrelid to 4. I can’t take HU because I have an inborn anaemia (Mediterranean anaemia) and I can’t do interfuron due to my Hashimoto thyroid condition. Due to the diet, detox and changing to bioidentical thyroid hormone from swine, my immune system has calmed down and I’ve been able to slowly reduce my hormone intake by 20%! On top of that, I now throw away only one small bag of garbage a week, but one small bag of organic waste each day. I even though of getting a couple of chickens to eat that up! Hahaha! Cheers Cja!