After reading previous posts from people with really serious problems I am embarrassed to be writing this. My platelets rose from 540 to 650 and Hydroxy. Increased to 6 a day women at weekend. Feel very tired and also have CFS and am useless. Spend every day alone other than a carer/nurse coming in twice a day. As I said, compared to others this is minimal. It I still feel down. Am on antidepressants (only for aweek so far). but am feeling pretty hopeless. Sorry to moan but I needed to tell someone. All my best wishes to those brave souls who are coping with so much more than this. Isolation isn't helping but haven't the energy to do anything. Sorry everyone. Could you send. E some of your courage and strength please. Thanks to
anyone inclined to reply. Mary
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Dont be embarrased by writing how you are feeling. We are all here because we have something going on in our bodies that we have no control over. This is the place where we will read something and go" thats how i feel" or " i understand"
Oh Mary. No-one will think you are a moaning Minnie. We all have our own ups and downs and we are all here to help each other as you know 😊. The bottom line is you do indeed have a lot on your plate and if it helps to chat on here then chat away. Also if you want to chat privately I am happy to listen 😘
Your antidepressants wont have kicked in yet so give it time.
I too would also be querying why your hydroxy has been raised so much so quickly.
Oh Mary - we all had a bit of a panic for you when you posted about your increased dosage - did you check with clinical nurses + did they tell you why you were getting such a jump? - you moan away as and when you need to, but please make sure of that dose!! Anne-Marie xx
Thanks a hand. I too was concerned about the increase but my. Haemo. Wasn't concerned. Not really sure what to do. Asked her why such big increase and what was happening and she just said it could be anything!
Firstly, may I ask if you checked with your GP about your recent increase in hydroxy from 2 a day to 6 a day? It seemed a huge increase in medication for an insignificant increase in platelets (50). A lot of us were, and still are concerned about you.
I’m sorry to hear of your ongoing feelings of isolation, it can’t be easy. Don’t ever feel embarrassed about posting either. Your health issues are obviously impacting your mental health. There’s no shame in that. Ask your Nurse/Carer if she knows of any organisations that can intervene.
Give the antidepressants a chance to work. They take a good few weeks to kick in. Hopefully, they will lift your mood.
Can only hope you will have a proper appointment reasonably soon to check your levels - I do feel you should be getting some sort of explanation!! Take care. xxx
Hi mary, As mary (mhos61) says I would first check with my Gp about dosage as I can't believe any responsible Haematologist would up your hydroxy to 6 per day. When prescribing hydroxy as well as your platelet count it is prescribed on your body weight also. As i've mentioned before mary I seem to remember you having problems with getting confused in the past. You also mention your continued feelings of isolatation,have you told your mental health team your under? i'm sure they have some kind of day centre were you could mix with people in the same situation. Sometimes mary you have to be willing to reach out to other people and try new things as in the past when people here have suggested activities to try to help you mix and help you with your isolation you haven't appeared very keen. You might be surprised how much you will benefit from it. On the hydroxy,I certainly would not take 6 a day before checking with your Gp. Atb,tina.🤗
Hi Mary you may need to be on your anti depressants for another couple of weeks before you start to feel any better. If after a month you’re still feeling as bad go back to your GP and get them changed. In the mean time try to focus on what you can do rather than what you can’t. Contact your local age UK and ask if they can help with your social isolation. Where do you live Mary. Maybe another MPN friend could buddy up with you. I’m here should you ever need a chat. Be patient it will get better. Val
Hi there, so sorry to hear you are struggling. When I have felt down in the past I found it helped to not look too far ahead just do the next hour. Try to give your antidepressants a bit longer to start to work. Sending you my best wishes and hope you resolve some of your problems.
You moan away- I just wish it made your situation a lot better than it does. Depression is a serious illness.
So you really are on 6 hydroxi a day. I remember you posting and lots of people including me begged you to check your dosage. When is your next heamo appointment ?
I am utterly amazed at the increase in Hydro. I am no doctor, but when I told my wife your numbers, even she pulled a face and said, "Hmmm that doesn't seem right" - I mention that because my other half is absolutely on the ball with this stuff. Reading loads from every place she can, paying a lot more attention than me at appointments, researching things, etc, etc.
I really don't want to be an internet doc, but I am starting to get a little concerned about the information (or lack thereof) that you are being given. Not sure where you are located, but I am lucky enough to be in a region that is renowned for it's medical excellence and the stories I hear from people like yourself are just making me feel a bit helpless on other peoples' behalf.
TO avoid a long post, I'll leave it here - other than to say that YOU ARE NOT ALONE (RIP Michael Jackson ). You are not soft, moaning, hopeless, useless, a failure, a burden...and all those things that we all will have felt at various times. I will admit to being on Sertraline for almost a year before I reduced my dose and took myself off them (happy to explain why if anyone cares!) so give that a chance. It does take a little while to get into (and out of) your system.
I think when people have a broken leg and are unable to function 'normally', it's a very visible thing and pretty much accepted. When I sit on the sofa and fall asleep for seemingly little reason, it CAN look lazy or whatever...yet I have a much more physically draining issue than a broken leg.
All about invisible illness - keep your head up and most of all, don't give in. Adapt. It will take time, but you'll get there.
Hi paul, yes why did you decide to come off the sertraline on your own? I'm interested to know as I would assume the knock on effects would be hard without medical advice.
My wording was not ideal, there - I spoke to my GP and said I wanted off. He suggested I half the dose for a month and see how I was as he didn't recommend 'cold turkey'. I did that and then just stopped taking them. I didn't go back to the docs before stopping completely.
Yes I had withdrawal symptoms, but it's well out of my system now.
TBH I never like taking drugs I don't absolutely have to. So my aim was always to use the medication to help me out while I needed it. Think of it like the pedals on an old moped - I used the drug to keep myself moving so that eventually my 'engine' could take over.
I also have a very strange attitude to medication in that I wonder, "How do I know if I need to take it?" The only way you can know is if you stop and then feel worse...yep, you definitely need the drug. I do the same with bruises, "Hmm, does that still hurt? *presses bruise* OUCH!! Yep - still hurts...I'll not press it again for a while". Ha ha.
I personally didn't like feeling nothing. I found that on the sertraline I no longer had emotion about things I used to - having a tear at a sad movie, for example. I found that the sertraline simply numbed me to the highs and lows of my own feelings. And that was definitely not for me. Perhaps I expected something different, I don't know...but I got to a point where I wanted to feel SOMETHING again...if that makes sense?
I 100% get why people will take the drug. I also 100% understand why people will try and reduce a dose only to immediately jump straight back on to it. It's a bit of a bumpy ride coming off them completely, for sure.
Imagine if your body had an 'emotions dial' a bit like a volume knob. On the drug, it's like someone turned mine all the way down to 3. Coming off the drug turns the dial round to 10 for a while but it DOES eventually get back to a comfortable 7.
I hope you read all these replies from the wonderful people on this forum and realise that you are not alone and many people want to reach out to you and help where they can with advice and support suggestions.
My main concern for you is the Hydroxicarbamide dose.
Have you spoken to either of your daughters about this as maybe they could contact your heam to clarify the dose? I think we all at times get given more and more tablets for different things and sometimes these prescriptions need looking at with fresh eyes to establish they are all still needed.
You have been feeling like this for two years Mary, that is far too long and someone needs to insist on some help for you.
Hello. Don't feel like you are moaning. You are coping with a lot. My partner has CFC as a symptom of his myelofibrosis and I wouldn't have believed how much an effect that could have on a person's life until I witnessed it. Being on your own and coping with you condition must also be tough. (Have you asked for a buddy?) And although you have a carer it just not the same as speaking to others in your situation who can offer support. But please keep posting as the support on here is really good and helpful xx
Please don’t ever think that any issue you have is to small to share. We all have moments where we need a little help, reassurance or just need someone to talk to.
You say you have been described antidepressants. A week is not long enough for you to feel any benefit but if after a few weeks you feel no better then please go back to your GP and they can prescribe another. Not all antidepressants work on certain patients so it can be a case of trying a few until your mood lifts.
Do you not have any family? If you do can you ask someone to come and talk to you. They may not realise what you are going through.
If you have no one you can talk to you know we are all here in the same boat and there are so many on here who will be happy to help.
Very sorry to hear that you are feeling so down. We all have periods when we are depressed and feeling alone. That’s why the forum is a safe place where you can vent and state your concerns. I agree with the others; the hydroxy dose seems awfully high. I never took more than 3/day in 11 years. My hematologist finally took me off completely because of worsening anemia. I think it’s time for a second opinion.
Hi Mary, I am also live alone, I do understand how you feel, and sorry what you've been through. Other members cv are right that antidepressants medicine does take a little while to get into your system. Like other members I do concern very much about your Hydrea dosage especially your platelets count us not outrageous. PLEASE find out from your doctor why you have to take that much daily, it doesn't sound right at all, I personal think taking way too much (like overdose) would be enough to make a person sick, we all know it's a very toxic drug. We are all concern about you.
Hope all work out. Talk to us anytime you wish, that's what we are here for.❤️
So sorry to hear things are so bad for you. Having a moan is what you need to do and certainly not necessary to include an apology or the embarrassment you expressed. Also, life is really tough for you at the moment and making comparisons with what may be happening for other people is no measure. What matters is how it is affecting YOU. I had a real moan on here very recently and was warmed and encouraged by the love and support I received. It encouraged me to look outwards for support because sometimes issues can just be too much. You mentioned that a carer/nurse visits each day. If this is a medical person, would there be a possibility that they could liaise with your GP or haemotologist on your behalf? Love and best wishes.
Hi Mary - me again!! Think you can tell from all these posts that we are all still very twitchy about the amount of hydroxy you’ve been told to take (and whether things might have got muddled on a phone consultation) - don’t think I’ve heard of 1 person on here taking that much (and on a smallish platelet jump) - please please get what dosage you should be on confirmed - it REALLY doesn’t sound right!!! Anne-Marie xx
Hello Mary, I am so sorry to hear you are feeling so down and alone. You are not alone by keeping in touch with all the lovely sympathetic people on this forum so please keep in touch and write when ever you need to. I too, like most people on here am very concerned to hear of the very large increase in the Hydrea you've been prescribed. It definitely needs to be questioned. Please keep in touch and let us all know how you are. Regards, Fran xx
Please know that you are not alone and that we all can undeestand how you are feeling. As the others have indicated, antidepressants take several weeks to kick in and often it will take even ionger to find the right dose. I will also joint the chorus of saying that your HU dose sounds too high. 6 x 500mg/day us well over the published max dose. HU toxicity is serious and potentially quite harmful. Please follow up on this ASAP.
Lots of us are concerned for you. Know that you are not alone and that we are stronger together.
Hi Mary. You are most certainly not moaning in my opinion you have plenty to moan about. I agree that 6 is far too many in my opinion. I was on Hu for over ten years and my errant platelets would keep climbing. My hem persuaded me to take four which just about wiped me out and I couldn't function at all. I eventually took 3 daily but still had many "noodle" days. As I said my errant platelets continued to climb I now take Interferon still get fatigue but not as bad.
So good that you wrote! Firstly, I haven’t known a single person who was helped with anti depressants, including myself. But there are apparently some few who are helped. It is really important to eat clean foods. Minimize grains and milk products and anything that may cause intolerances. 80% of our seraronin (happy hormones) are made in the gut, NOT in the brain. Once the gut is healthier, there’s increased energy, clearness of mind, better sleep.better digestion. You must be having a stool every day. If not, and that might be the case if you are only sitting around indoors, your body is not cleaning itself and you reabsorb toxins, which also cause depression m, weakness, brain fog and all kinds of other symptoms.
Hydroxyurea and all our different therapies are not easy on us. We have to work against them by leading a super healthy lifestyle. As much as each of us can.
Please ask the ladies (caretakers) that come, to take you out for a small walk around the block. As much as you can. Natural light is so important!!! Movement, as well! Every step you take will get your system moving. Deep breathing exercises are also super. If you have vein problems, get compression stockings to keep your blood flowing. If it’s stuck in your feet, that’s another fatigue maker.
Choose one beautiful image from you life experiences that makes you really happy. Close your eyes and concentrate on it for as long as you can. See it in your mind’s eye, feel it, smell it, walk in it. Smile! Do this whenever necessary throughout the day.
I really hope you find some info here that may help you.
Write us whenever you need ears to listen, just like you did today!
I and many others on this forum have been so concerned about the increase in your Hydroxycarbamide to 6 tablets a day, so I asked Prof Harrison about this, she has said:
It’s a huge increase and above the usual maximum she should check
I am putting this reply on all of your posts where you have mentioned your dose increase and where people have been advising you. Maz
Mary has checked with her haematologist and there was a mistake, she now has the correct dose to take which is a lot less, she will let everyone know of this herself when she feels better. Maz
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