The itch

Good afternoon  and welcome to the Online Community but always sorry to see folks finding us.

So its great that you have not been diagnosed with HL and lets hope that this continues.

Its also great that you are being seen by your GP and your GP is being proactive and taking you seriously. You do need to continue to work with your GP as they will work through the list of things that they have available to check what is going on with you. If they don't get an clear answer they will refer you on.

I don't have HL but a rare type of Non Hodgkin's lymphoma and yes, for some the itch can be an initial sign of the development of HL.....but for a much much higher percentage its not.

Lets look for you to get some clear answers and that you will come back in the future saying that this was nothing to do with HL.

Symptoms of Lymphoma

Pingu,

There can also be other root causes for pruritus (extreme itchiness). You should see an allergist who can do skin tests to see if you have any skin allergies. You should also see a dermatologist, ideally one who specializes in alternative diagnoses for skin issues (i.e., someone who looks at other health issues including cancer to diagnose these types of issues). Your chest x-ray was negative, which is good news (but doesn’t help you much). A ct scan might help show something if you have lymphoma (fingers crossed that you don’t) and it is south of the diaphragm.

Keep track of the night sweats and see if you have any more.  It is very hard to say if your fatigue is normal with work and kids. Feel around your neck (including at the collarbone), arm pits, and groin for any lumps which might be swollen lymph nodes. Be sure to describe your fatigue, night sweats, and any lumps to your doctor. 

I had the itch for over a year before I was eventually diagnosed with HL. It can be different for everyone, I can only describe my experience. My itch began in my legs and over the period of about two months it climbed up the rest of my body.  By that point I was itchy everywhere except for my head and the bottoms of my feet. The skin was becoming inflamed (red and puffy) due to histamine reactions which made it more itchy. Like you, my doctor gave me antihistamines to reduce this, but it never stopped the itching. Besides my skin getting red and puffy, I had a number of cuts and would get blood stains on clothes and bed sheets. Like you, I was itchy day and night. Night time was generally worse though since there were fewer distractions and fewer people around, so it was easier to give into the urge to scratch. Also, the longer I resisted the urge to scratch, the itchier I got and the more I would scratch to make up for it. So when I’d get home from work I’d change clothes (into blood stained ones that I could wear around the house) and get in a good scratch.

I never felt like ripping my skin open, I just had a constant urge to scratch. 

To be honest, there were only three things that really helped. Early on my doctor prescribed a 10 day burst (with tapering) of prednisone. This gave me about 8 days of absolutely no itching or scratching which gave my skin some time to heal. Doctors are wary of prescribing steroids so I only got this twice during my year of itching.

The other two things that helped were to apply cream to my skin after showering (short showers with mildly hot water). The best cream was Cera Ve. It goes on very quickly and helped my skin to heal and be slightly less itchy. 

Lastly, and the most important and effective, keep your finger nails as short as possible. I would clip them short enough that there were no whites. After clipping them, file them so that there are no sharp points that can really cut you while you scratch. The result is that as you scratch, you are largely just rubbing the skin and doing less damage. 

Hopefully you will discover the root cause of your itching soon, and hopefully it is more benign than lymphoma. Take care. 

Jason

Hi Jason,

Thanks very much for all of that information and your experience, it is very much appreciated.

Would you mind me asking if itching was your first symptom? And was it your only symptom before diagnosis or to lead on to other ones?

Thanks again,

Hi Pingu,

 I was itchy for just over a year before I was diagnosed. It was my first symptom. I started losing weight about 3 months before my diagnosis and lost about 30 pounds over that time. I also got night sweats during the last 6-8 weeks and was having several a week (sometimes even two a night) by the end. I was fatigued as well, but I work full time, have two teenagers, and a dog who likes 1-2 hour walks twice a day (I had the morning shift), so who knows if the fatigue was normal. I also developed significant shoulder pain which significantly impacted my sleep. I suspect that this was due to the tumor in my chest shifting things around (it warped my sternum as it passed through it). I would wake up several times during the middle of the night and do exercises to loosen up my shoulders and back. That tumor also obstructed some blood vessels going from my neck to my heart, which caused my blood pressure to rise about 10-20 points (both systolic and diastolic) and caused my resting heart rate to be around 120 beats per minute (my doctor had me wear a harness that measures the electrical impulses for 24 hours but it didn’t reveal anything). Following treatment, my blood pressure has gone back to normal, but my resting heart rate is around 100 beats per minute, so it is still high. I learned recently from my last pet scan that despite the tumor no longer pressing on the vein, the vein has kind of collapsed, so it is still effectively obstructed.  One side effect of this neck vein issue is that when I bend down with my head below or level with my heart and then straighten up, blood pools and drains slowly from my head and it feels like my neck is swollen. It makes doing the dishes a real pain. The elevated blood pressure and heart rate started about the same time that I started itching (if not earlier since I didn’t measure them frequently).

Eventually I noticed a swollen lymph node in my neck and I developed a bulge in my chest as well over my sternum. I was diagnosed shortly after that following an abnormal chest x-ray, abnormal ct scan, and a biopsy of the swollen lymph node in my neck, which identified my exact type of cancer and then a pet scan to determine my stage. If memory serves it was about 3-4 weeks from the x-ray to the pet scan. I started chemo 2 days after the pet scan. Once things start moving, they really start moving. In some ways I was relieved when I finally got my diagnosis because it fully explained all of these seemingly unrelated issues that I had been having and was treatable (even though it was cancer).

I hope that you determine the root cause of your itching soon, and that it is easily treatable.

Jason

I have a similar situation. I am extremely itchy - mostly my armpits and scrotum. It's the worst there. But my chest, arms and legs itch on occasion. At first, I thought it was scabies mites so I spent 8 months treating myself for that. Next, I thought it was Jock Itch (Ringworm) - which it still may be.

My doctor suggested a chest x-ray. Does this diagnose it? I am in the USA so we have to pay a lot of money for x-rays.

Thanks for any help anyone can provide.

Itchy Scratchy,

I’m sorry that you are going through this. A chest x-ray can be the first step in diagnosing Lymphoma, although Lymphoma can also occur below the diaphragm, in which case I suspect that a chest x-ray won’t detect it, but a ct scan would.

I was itchy for a year. I saw my primary care physician, an allergist, and a dermatologist. The doctor thought that it might be scabies too. The next step was going to be to see a dermatologist that specialized in alternative diagnoses, but I got diagnosed a couple weeks before that appointment. I recommend that you do the same. 

I also recommend feeling your neck (above and below the collar bone), armpits, and groin regularly for lumps from swollen lymph nodes. I actually found one in my neck and that led to a chest x-ray. The chest x-ray was abnormal so they had me get a ct scan. From there I had surgery to remove the lymph node from my neck and biopsy it, which gave the official diagnosis. Then finally, a pet scan was done to determine the staging. 

So, I recommend one or more of the following:

1. See specialists (allergist, dermatologist, dermatologist that specializes in alternative diagnoses)

2. Feel for lymph nodes and watch for other symptoms (see my previous posts on this thread)

3. Get an x-ray

You mentioned that you live in the US. I live on the west coast.  You also mentioned paying for x-rays. Do you have health  insurance? I’ve been lucky in that my insurance has covered most of my expenses once I got past the deductible. 

I hope that you are able to resolve your itchiness and that the cause is benign. 

Jason

Itchiness can be caused by so many things, so I wouldn't jump to conclusions.

HL occurs in the mediastinum (chest area) about 75% of the time, so its good that chest x-ray is clear.

My sons blood tests were normal even at diagnosis, except LDH which is reflection of the tumour burden. It depends which blood tests they do to be honest, but you would expect some blood tests to raise suspicions.

Hi Itchy Scratchy,

It's been a few years since you posted this so not sure you'd see it. I find myself in a similar situation where I've had unexplained itching (without a rash) all over my body. Mainly on my back but it's also my legs, my scalp, sometimes even thr palms of my hand. 

Did you ever find out the cause of your itching? Definitely got a bit worried reading this forum and others that mention body wide itching was the first symptom.

Hi Jayjay12 and welcome to this corner of the community. I am Mike and I help out around our Lymphoma groups.

I have lived and been treated for a rare type of incurable HL for over 23 years now so understand the journey well

Yes his post us a few years old but the members may still be looking in.

Unexplained itching is indeed one of the Common symptoms of lymphoma. I did not have any itching although my type of NHL was a skin Lymphoma……. Yes Lymphoma is very confusing.

Have you been diagnosed with Lymphoma or are you generally searching for answers to your itching?

Hi Mike, thanks for the welcome. I saw your responses earlier and apreciate your patience and support. Most times in forums people looking for answers immediately get dismissed.

Hope you have managed to get treated and recovered now.

I have not been diagnosed with anything, just looking for answers for my unexplained itching which has been y Kung on for a whole did all types of allergy tests and nothing came up. So wondering if I'm looking in the wrong place with dermatologists. 

Jay