I was diagnosed with Monoclonal gammopathy of unknown significance ('MGUS') yesterday and have to have an MRI and regular blood tests but 2 of my symptoms of itching and sweating were dismissed totally so I have to just live with them which is really getting me down. Has anyone found any solution if they suffer with this?
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Morning @Katiep and welcome to the forum.
Iām so sorry youāre experiencing this. Itās incredibly frustrating when you are struggling with physical symptoms.
A few quick tips from the community:
ā¢ Try soap-free washes and keeping showers cool. Some members find cotton clothing helps more than synthetics.
ā¢ Keep a āsymptom diaryā of when they happen. Showing a doctor a written log of ādrenching sweatsā is often more effective than just mentioning them.
ā¢ If itās really getting you down, you can ask your GP for a dermatology referral to specifically address the skin issues.
There is some really useful information on the website:
ā¢ Blood Cancer UK: About MGUS
ā¢ Blood Cancer UK: Managing itching
ā¢ Blood Cancer UK: Tips for talking to your medical team
You shouldnāt have to just ālive with itā without support. If you want to talk it through with one of the wonderful nurse team, the Support Line is on 0808 2080 888.
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Hi @Katiep could you be menopausal and not on any HRT? That can also cause both of those symptoms? Iām sorry you have the worry of Monoclonal gammopathy of unknown significance ('MGUS'), but please take some solace in that it may never, ever progress to anything else, my dad had it for a number of years, and it never became active mm, whereas I went straight in as active, with no symptoms x keep posting, we are all here for each other x
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Hi no Iām through the menopause as I had a hysterectomy 10 years ago for ovarian cancer. Iām 67 and on HRT oestrogen only and my hot flushes stopped years ago but this sweating just started out of the blue about 5/6 months ago.
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@Katiep ahh ok Iām in surgical menopause too, honestly coukd be worth asking GP for an estrogen blood test, Iāve been tested last week and found my oestrogel is no longer effective and need a stronger one,Iām 56 and had a total hysterectomy 3 years ago. My dad did get night sweats, i donāt know what to suggest other than stay hydrated and maybe an anti-histamine for the itching if itās disruptive to sleep or your day?
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Hi @Katiep,
Being diagnosed with Monoclonal gammopathy of unknown significance is a lot to take in, and from what youāve said the itching and sweating are clearly affecting your quality of life. Iām sorry youāre dealingwith this. You shouldnāt have to just endure this discomfort.
@Julesās suggestion of keeping a symptom diary is a really practical way to make that case. Thereās a handy diary you might want to use here. And @Byrnebabyās point about checking your oestrogen levels is worth pursuing too.
Our Support Line is there if youād like to talk any of this through, and is staffed by some wonderful blood cancer nurses. You can call for free on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Keep posting whenever you need to.
Ceri - Blood Cancer UK Support Services
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Hey @Katiep one of the things that I have learned about these conditions (mine is Essential Thrombocythemia or Essential thrombocythemia ('ET')) is that there is a disconnect between the focus and goals of patients and their physicians/healthcare providers. For the professionals, they seem to be very focused on the goal of getting the balance right of getting things like the blood levels of platelets in the proper range. For patients, that may be great, but we are also very concerned about issues such as fatigue. I found an interesting research article about this, FYI https://www.sciencedirect.com/science/article/pii/S0006497125109191?casa_token=lfnI6Sp4lA0AAAAA:VFy-XaAocX6sVJYfL8BJ99Xgspgfq1xlcmFadsG1jTMrVJbGIr_10z9XusWM22Y0ZsJXh9SCDVI It is not that the professionals are uncaring, but they seem to feel that they have done their job when the platelet levels are in the right range. But patients want to feel good and not have fatigue and trouble sleeping! I am seeing a wonderful hematologist but they donāt really give me any information about things like managing fatigue or sleep troubles, if the lab values look good, they view this as successful and their jobs as complete.
I think that we as patients have to find ways to help each other manage these symptoms that the physicians and professional healthcare providers donāt really have answers to.
This is a challenge in many areas of healthcare. I am a psychologist who has worked in medical settings a good deal and finding ways to not only provide excellent medical care, but also help in maximizing quality of life for patients and their families, is a challenge in many medical conditions.
Bill
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Dear @Katiep,
I am sorry to read how you are feeling after your appointment this week. I can imagine the appointment itself was very difficult and feeling unheard must have been disappointing on top of this.
Can I ask if you have spoken to your GP about your itching and sweating? I only ask as these symptoms would be slightly more unusual for Monoclonal gammopathy of unknown significance ('MGUS') and I wonder if they need alternative investigation? I would hate for these symptoms to be dismissed when actually they have another cause and could be managed in a different way.
We would be happy to talk things through with you, out number is 0808 2080 888 if this would be helpful.
Best Wishes,
Heidi J (Support Service Nurse)
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Theyāve tried everything for the itching but nothing helps and the sweating they havenāt taken any further 
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Oh @Katiep, that is challenging.
I am sorry that nothing is working for this symptoms.
Have they perhaps considered referral to another specialist or maybe dermatology?
Best Wishes,
Heidi J (Support Services Nurse)
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Hello again @Katiep, just wanted to sympathise with you about those irritating symptoms. While youāre certainly not alone in experiencing itching or sweating, you still have to tolerate them which I donāt imagine is any fun.
Like others have said, itchy skin can be pretty common with blood disorders, night sweats too. The Blood Cancer UK link that @Jules shared about itching has some further suggestions for causes;
āNot all itchiness will be related to blood cancer or its treatment. Common causes of itchy skin include:
- allergies
- eczema
- hormone changes
- insect bites
- the environment in which you live and work (for example, if you are exposed to certain chemicals).
People with kidney or liver disease may also experience itchy skin. This is caused by a build-up of waste products in the blood as a result of poor kidney or liver function.ā
Might it be worth asking your GP to test for any of these other potential causes?
One last point but if your doctors continue not to look into these symptoms youāre tolerating then do consider using Jessā Rule to seek answers, an āinitiative to encourage GPs teams to rethink a diagnosis if a patient presents three times with the same symptoms or concerns, particularly if symptoms unexpectedly persist, escalate, or remain unexplained.ā
Please continue to seek answers and do not feel like youāre asking too much. Your health is vital and your doctors should want to help minimise all your symptoms.
Hope that helps a little @Katiep, please keep us posted.
Iāve asked for a referral but with the new rules about referrals they have to do a lot of things themselves before they refer you and then the waiting list is so long! Iāve had every cream going and several antihistamines but nothing works. Iāve been suffering this on and off for over 3 years and Iām seeing my GP on 1st June but Iām honestly at my wits end with it and feel like giving up completely. Iām facing my granddaughters wedding in 6 weeks and Iām dreading it I just canāt seem to put a brave face on anymore. Iām so tired of pretending to everyone Iām ok when Iām not. Iām not seeing the haematologist again until 29th July. Itās all just so frustrating at that first appointment it was āwe think you have Monoclonal gammopathy of unknown significance ('MGUS') hereās a leaflet byeā from what Iāve read the abnormal proteins in the blood can cause skin itching and it falls under the term MGCS but they were definitely not interested in that symptom at the hospital.
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Thank you Erica. I was doing ok but the itching is really bad and now I can connect it to the blood disorder Iām feeling pretty low as I canāt see a way out.
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Hi @Katiep , Iām sorry to hear the itching has got so much worse.
One thing I want to say clearly: you donāt have to just cope with the itching. It may have felt dismissed at your haematology appointment, but if itās worsening, itās worth raising again with your GP and/or your team. Our page on itching and blood cancer is worth a read. Myeloproliferative neoplasms ('MPN') Voice - a charity for people with related blood conditions - also has some practical tips from patients on managing itchy skin. Some of the self-care suggestions may help:
-
Swap to an emollient soap or soap substitute, and use a good moisturiser regularly
-
Drink plenty of water - staying hydrated can make a difference
-
Watch out for overheating, especially in bed - heat can trigger or worsen itching
-
Wear loose, breathable fabrics; 100% cotton tends to be kinder on sensitive skin
-
If itching starts, try pressing the area firmly rather than scratching
You might also find it helpful to browse some threads where other members have been through something similar:
- this one about MGUS and skin sensations
- this one about symptoms and not knowing whatās significant, and
- this one about MGUS symptoms that arenāt always officially recognised.
Youāre far from alone in this, and if youād like to talk things through with someone in the meantime, our Support Services team are there - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.Theyāre fully trained specialist nurses who migth be able to give you further advice on dealing with your symptoms, or indeed how to bring it up with your team.
Take care and let us know how youāre getting on,
Ceri - Blood Cancer UK Support Services
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oh @Katiep I am so sorry to hear about your itching.
@Ceri_BloodCancerUK has given you a far better reply than I ever could.
After reading @Ceri_BloodCancerUK response perhaps you might feel just very slightly less low and there might be a chink of light at the end of the tunnel.
We are here for you to support you, you are never alone and you are a valued part of our support forum..
I have just been out for a walk and the diversion and fresh air has really helped me. Me and my obsessive mind are sometimes not the best friends !!!
Sending you virtual hugs, be very kind to yourself and please do keep posting.
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Hi @Katiep I have just replied to your other post.
For me it would be utterly tiring and exhausting putting my āeverything is fineā face on things, I have done it enough. I have so often put my āIām fineā face on things, it is my default mechanism and then I get my real pet hate āOh, you do look wellā and I want to scream that I am feeling horrible inside and really struggling.
Perhaps just try and take it a day at a time (I know it is not easy) but it is often all I can cope with, sometimes only an hour at a time or even less.
Be really kind to yourself xx
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