Hi @CathyP
How are you doing? Did the steroid injections help?
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I’m currently reading a lot about the condition and am drawing up a list of questions to ask the doctors and nurses thanks to the website. At the moment I’d like to know what level of risk I’m classified at. I like to think low but I’m a natural optimist!
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Hi @Hughbie
You’re doing all the right things. There is actually a prognostic risk score you can use yourself -provided you have been given all the information by your doctors. If you want to do this, here’s a link.
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Hi Chrissy sorry for delay I am not online much anymore. My symptoms are much worse (increased fatigue, blood spots, night sweats, lymph nodes up in throat, boiling hot and freezing cold flu like symptoms) but my bloods in October were stable. My three month blood check is due soon with Myeloid Clinic appointment on 5th February. I will be interested to see the blood test results given that the inflammation in my body is now all consuming. I can’t walk or use my hands (my husband is typing this), I can’t eat very much at all due to stomach inflammation. Before Christmas I had synovial fluid drained from my left knee (50 mls!) which made a huge difference to the pain and I had a steroid injection in my bum. The steroid injection has made no difference to the other joints (right knee, both ankles, elbows, neck, fingers, thumbs, wrists, back of hands, toes and back of feet. Still just on paracetamol as anything else aggravates the stomach. Another appointment tomorrow at the hospital in Oxford to drain fluid from right knee so hopeful after that I can walk. Have moved bed downstairs as we have a downstairs bathroom. Husband is doing everything for me but hopefully if draining the fluid makes a difference to all the joints I can get my independence back a little and just have that done regularly to keep it at bay. Myeloid clinic at last consultation had no idea whether this is caused by leukaemic synovitis or an autoimmune reaction but the very knowledgeable rheumatologist seemed to think they would be able to tell that by test the fluid drained off so he is going to liaise with Myeloid clinic about this. Rheumatology department also did x rays before Christmas and discovered osteoarthritis in quite a few of my joints. Various drugs have been offered and then dismissed due to the side effects including Methotrexate, Gabapetin, I probably haven’t spelled those right! I think some of the drugs interefere with the blood cells, I’m not really sure but I’m guessing some of you have more knowledge than I do.
Thanks for checking up on me. I am very down as being in constant pain is the biggest challenge I’ve ever faced but I have to keep believing that someone out there will be able to offer me something that will stop or at least dull the pain one way of the other. My GP hasn’t been much help and has dismissed the effectiveness of pain relief patches and Tens machin or similar so not sure whether to bypass GP and try and get help elsewhere as I’m willing to try anything to be honest.
I hope all of you guys are as well and comfortable as you can be and that you all managed to have a good Christmas xx
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Oh @CathyP I just do not know what to say, you really are going through it, it must be really challenging for you and your husband. I cannot imagine my husband typing the post above for me.
I know that continuous pain really drags me down physically and emotionally. Personally I find a diary of my symptoms stressing my pain levels and debilitation works best for me and of course being pleasantly assertive and asking them what they can do to help you. In your case perhaps your husband could say how it really is for both of you too.
So thinking of you loads and sending you loving vibes and please do use the Blood Cancer UK support line on 0808 2080 888m, the nurses are so helpful and lovely and keep posting when you are able too xx
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Dear @CathyP So sorry to read this & everything you’re going through. I really hope you can feel easier soon. Much love & best wishes to you 
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Hi @CathyP
I’m so so sorry to hear how much pain you are in and how you must be struggling. Just hoping that some answers are found soon and that you can get some relief. Could you ask either your rheumatologist or haematologist if they have had or could organise a multidisciplinary team meeting (MDT) to discuss ALL your symptoms as you seem to have multiple areas that need looking at? Such a shame your GP isn’t being more helpful but frankly, other than stronger pain killers which will undoubtedly cause more stomach irritation, there’s not a lot they can offer?
We are all thinking of you.
Xx
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Hello @CathyP
So sorry to read about how you are feeling and the pain you are in. We can imagine this is a difficult time for you.
I can see others have replied with supportive messages and advice.
I just wanted to check in with you and ask if you have contacted your haematology team? As we would strongly advise getting in touch with them to keep them updated on how you are doing so that they can support you as best they can.
Warm wishes,
Emma (Support services nurse)
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Hi Chrissy and everyone I joined the Leukaemia Care Zoom chat this afternoon but once again too shy to actually join in, I am very chatty on this forum typing away as it feels more intimate, not so confident with the speaking in groups in meetings. So I just lay in bed and listened ( I’ve caught a bit of a cold which I used as an excuse but more on that later). But just wanted to say to you Chrissie that once again I found your input the most interesting of all, so very positive and informative (even the bit where you were a “realist”, it’s good to be that way I think rather than sugar coating the reality).
I have a lot to update here for you and the group, a lot has happened over the last few weeks since I was last on here in January, so read on if you have the time, this is a very long read so look away now if you need to! But you may find it interesting, I certainly have found it so if also a little bewildering!
So last time I was here I was pretty down in the dumps with the constant pain in my joints, not eating due to inflammation in my stomach, psoriasis on my skin and scalp, breathlessness to the point where I couldn’t manage the stairs, etc. Occupational health rang me and were talking about putting a stair lift in our house. A wheelchair was discussed. Various appointments with rheumatology. To be fair they were amazing and at one point I was seeing them once a week either for discussion or treatments and I really felt like they were treating me as a priority.
Then on 20th January I was prescribed Hydroxychloroquine. It honestly didn’t make any difference to the awful symptoms I was having but I was told “it could take a couple of months to work”. They said they would like to also put me on Methotrexate at a later date but to go with the Hydroxychloroquine first.
So all the existing symptoms were about the same but the breathlessness got worse. My GP told me over the telephone that it was anaemia to be expected with my condition. Eventually, I became very concerned as I felt like I had a brick on my left lung, couldn’t get any air in almost and my heart was banging away in my chest from even getting up from my chair. So I went to the surgery in person this time and saw a different GP who listened to my chest and took my pulse etc. and said she suspected pulmonary embolism and told me to go to AAU at the hospital. My husband took me and I was there for seven hours, during which I had a CT scan and they said it was “clear”. No issues with heart or lungs. During my time waiting, I noticed a rash breaking out on my hands and arms, then lifted up my shirt and noticed it on my tummy also. I showed this to the the doctors there and one of them took a photo of it and said they would message a dermatologist in another part of the hospital. The dermatologist said it was probably psoriasis like I already had on my scalp and they sent me home.
By that evening and into the early hours the rash spread and was incredibly itchy. I took some photos of my stomach and legs which I could show you but probably best not! It was a purple - red rash and it spread over my whole body and kind of joined up so that eventually it looked like very bad sunburn and was very hot and sore. By this time it was 1 a.m. and I didn’t want to wake my husband so I ran the Out of Hours GP service and thankfully got the most amazing lady doctor who spent an hour and a half with me talking and liaising with various specialists on the phone and then coming back to me. She then got hold of AAU and said I was an emergency and I must be seen as soon as I arrived. They were apprehensive as it was a Sunday/Monday but they agreed. I’m so grateful to her.
When I arrived my heart was racing and they took one look at me and whisked me off to a side room and put me on a drip. I was in hospital for three days. Apparently I had something called “drug eruption” (yes it sounds like a rock band doesn’t it!) caused by the Hydroxychlorine tablets. The consultant on duty was very knowledgable about it and had looked at my notes and said that as I was being monitored every three months for a leaky heart valve I should not have been put on the drug in the first place as it has adverse affects on the heart’s function. So he was a bit cross that rheumatology had prescribed it. Anyway to cut a long story short, I started to feel better after a couple of days, got sent home and told not to take the Hydroxychloroquine anymore (obviously) and then as soon as I was better I got a phone call from Rheumatology saying ok we are going to give you a big dose of steroids for 6 weeks and after that we will start you on the Methotrexate. This was a week ago and the recovery I have had since taking 30 mg of steroids a day has been astonishing. Every single symptom I had has gone within the first two days of taking them. My joints don’t hurt at all, my skin doesn’t itch, my stomach has settled and I’m eating well, my breathlessness has completely gone and my heart has settled. In short, I feel “normal” for the first time in months. Obviously, I can’t stay on the steroids for every so now I am worrying about how I will feel when I have to stop taking them. Then on Monday this week, I started taking Methotrexate which I think is supposed to suppress my overactive immune system. Then today for the first time in nearly a year, my glands came up and I’ve gone down with a cold. It’s really full on out of nowhere. So now I’m thinking is it the Methotrexate? Does it work that quickly? Is it suppressing my immune system and leaving me susceptible to germs? So much to process but for the moment I am enjoying not having all the other awful symptoms and hoping even when I come off the steroids there will be some long term effect. I’m not sure how long I need to take the Methotrexate for, I forgot to ask if it’s a long term thing.
So I was very interested today listening in on the Zoom call to the comments that about 25% of people having an autoimmune reaction to Chronic myelomonocytic leukaemia ('CMML'). It does seem I might be in that 25%. I don’t know if all this would have happened to me anyway without the Chronic myelomonocytic leukaemia ('CMML') developing in me. Thankfully, my symptoms are not as bad as the lovely gentleman we saw today on the call is having to deal with but I’m certainly learning a lot through my own experience and from interacting, albeit remotely with all of you here and with those on the Zoom calls.
Sorry again for very long post but being an ex- secretary fast typist I do find rambling on this way much easier than talking face to face. Consider yourselves all updated on my current state and thank you all so much again for all your kind comments in recent weeks. Apologies that I haven’t replied sooner but I do appreciate you and this forum so much. As I said, I find it more personal and easier to deal with than a large group of people.
Lastly, I hope you are all doing as well as possible and I will try not to leave it so long next time before I hop on here again. I might even be able to be useful to someone one day on here instead of asking others for help or writing very long posts about my strange health issues!
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Forgot to say, in between all this I had my usual three monthly blood tests at the Myeloid Clinic and was told they were better than when I had them done in November. So the awful symptoms I’ve been having do not seem to tie up with the results of the blood tests at all. The only thing that was “off the scale” (the consultant’s words) were the C reactive protein results, i.e the inflammatory markers, hence all the inflammation I suppose.
Hi @CathyP
Goodness what a rollercoaster you’ve been on. So scary for you but the great, great news is that your treatment with steroids seems to have started turning around all your symptoms. Quite amazing! Apparently methotrexate does affect your immunity so maybe you’ll have to be extra cautious when out and about. Here’s the NHS website info
I wonder how long they will keep you on 2 types of drugs that help with autoimmune issues?
Good that your usual blood counts re Chronic myelomonocytic leukaemia ('CMML') haven’t deteriorated and no wonder your CRP was high!!
Glad the meeting was useful to you and please don’t worry about not speaking. It’s whatever you’re comfortable with. I’m just nosey and want to see people’s faces!!Glad I didn’t upset you as I did feel I was getting a bit of a telling off at one point but I would feel hypocritical putting a positive spin on some of the issues that affect us. As far as I know, those stats on SCTs haven’t changed in all the years I’ve been asking about them - depressing though that might be! Should I have just kept quiet? Annoyingly there do not seem to be any public domain stats published but I feel there should be, and transplant centres should publish their own results too!
Long may your respite last. Sounds like a small miracle! As I said, this Chronic myelomonocytic leukaemia ('Chronic myelomonocytic leukaemia ('CMML')') has do many manifestations and it makes it all the more puzzling -both for us and the clinicians. But enjoy normality and scoff away. I think steroids can give you an appetite? 
Chrissy
X
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Hi @CathyP Only just catching up with your posts. Gosh what a time you’ve had!! 
So glad to hear the steroids have been helping. Thinking of you. Sadly my husband & I weren’t able to make the zoom meeting on Thursday. Hopefully we can make the next one & ‘see’ you then. So good to see you posting on here, it’s a wonderfully supportive forum. Best wishes to you
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