Has anyone experienced SJS also having CLL? i am suffering from it for 2 months and still have a lot of issues with mouth and tongue, very dry and tight mouth, saliva that look like acid and damages all tissue in side of the mouth, tongue and receptors that are damaged and everything you put in the mouth feels like is burning, cant eat at all, Doctors tried everything but still not recovering.
if someone has had this or similar experience please let me know.
Thank you
I’m not familiar with this. I’m glad you are asking about it on this forum. There are so many here who respond with good and helpful answers. I wish you relief and am praying it comes quickly. Sandra🙏
Hi. You are having a very rough time.. that sounds super uncomfortable.
I’ll trust that the nurses and doctors are doing plenty to help make you feel comfortable.
Welcome to the CLL community here. I’m glad you found it, a community that can provide helpful knowledge and supportive comments.
It can be helpful to indicate your approx age, perhaps in your profile notes [I see no reason that HU should have your actual DOB], as it may be relevant to some questions on treatments etc.
Sometimes it may be a place for a little diary of key events, of treatments.. this may help other people to give better answers in relation to CLL treatments.
I imagine you know by now that CLL <=> results in immune compromise, with this worsening during most treatments, and for some recovery time following treatment.. but treatment does not resolve this immune compromise.
When do you feel it likely that CLL started? — that is, looking back, did you start getting unusually fatigued, or getting more infections / longer infections? Did you notice when lymph nodes became swollen?
Do you have your CLL lymphocyte blood counts?
It sounds like you may have the SLL presentation — starts with bulky lymph nodes, where the CLL presentation starts with high blood lymphocytes..
I have the SLL version, it was stage 4 when it suddenly presented..
SJS — it seems that the cause is generally uncertain, lots of hypotheses, with some variety of drugs as possible triggers, and some various infections as possible trigger..
This makes me feel that your CLL immune compromise is likely connected with your SJS.. treatment of CLL might well help resolve it.. that you likely have an infection taking advantage of your lowered immune health..
I guess that the doctors have been testing for lots of infections, trying to Find one that might explain the SJS ?
What CLL treatment are they starting you on? Have they said?
This may be based on what your body can tolerate — I had BR, based on this being least heavy on my poorly kidneys.. — else it will be determined on some balance of your CLL genetic details and ease / speed of action / best compromise..
Stay in touch, ask any questions that occur to you — hopefully someone is familiar with SJS.
Are you starting treatment immediately?
Will be thinking of you.
One day at a time - we are all in this together.
Thank you for your support and kind words. I am 32 years old, noticed the CLL when Lymph Nodes got swolen before that I was fine. The SJS developed before I had my treatment for CLL, i was not on any medication at the moment so it Is very difficult to be sure what have triggered it. Only had taken AZ vaccine and paracetamol for the fever from her.I have very good expert doctor in CLL and after 3 weeks of having SJS he started the CLL treatment hoping that by doing that the SJS will come down, I am on obinutuzumab and a week ago on Venetoclax. Lymph nodes has gone down and blood is showing improvement too just this Syndrome is still persistant. They always testing for infection but cant find and locate one, and I on the other hand am with temperatures all the time.
Good to hear that you have specialist in CLL, and that there are plans to involve other experts.. teamwork.Your drug combination looks very effective.
Yes, treatment can see a thorough change to allergic factors, so it might well, given time, be part or all of the answer to SJS.
You are among the youngest CLL patients, which I comment just as perspective.
Some of us have ideas of what factors contributed to our CLL - a mix, from genetics, through intense / prolonged stresses, exposure to glyphosate ‘Round Up’ weedkiller, etc.
When did you have the AZ vaccine? 1 dose or two? How soon did the SJS start?
My feeling is a hidden infection is more likely — some infections are seriously very difficult to test for.. whole high tech labs got to work on soldiers returning home with Gulf War Syndrome, and managed to find a common infection, which upon treatment helped resolve things.
.. intact immune system do so much work without our realising.
Have they treated you with antibiotics for the infections of immune compromise? / are you on prophylactic antibiotics?
Fevers is not surprising, as you will be likely to have a major immune dip right about now.. the neutrophil blood level is one to ask about: 1 is low, less than 1 is in the ‘neutropenic’ range of high risk.
We’re you an allergic child — asthma, eczema, etc?
I was/am that allergic type, in my case I further discovered egg allergy in my 40s, which likely did me no good through years of egg exposure.. no more eggs for me.
I hope that little by little, or, better, in a more dramatic way, your SJS resolves.
Keep us posted?
Got my fingers crossed for you.
Had the first dose on 05.03.2021 and after two days things started to get worse and worse and got admitted to hospital on 14.03.They have given me and kept me on antibiotics most of the time, just to be sure I am covered.
It was very unpleasant surprise to be diagnosed with CLL at this age, but hope to recover from all this.
That positive attitude is required and will help.
One thing at a time.. and then it will be a matter of adjustments — the CLL wisely requires some adjustments of precaution against getting infections and faster escalation if infections occur.. and regular blood tests, of course.
All these vaccines do quite a bit of work.. the AZ includes histidine to promote histamine production.. to stimulate a full on (allergic) reaction to make the magic happen..
Such a rare syndrome, you are already aware that you are very unlucky — let’s hope the treatment soon sees things resolve, and maybe the doctors work out some of the detail too.
Welcome to the site, and please know how sorry I am to hear you are suffering with Stevens-Johnson Syndrome. I have not had it, but the symptoms have to be impossible to feel any comfort. I do hope you are finding some ease of the symptoms.
You say the Drs. did everything they could, but just in case they didn't look at meds, I am asking:
Did the Drs. find any medication that may have caused the syndrome? I read that "usually" there is a link to some medication or an infection. The list of medications I found that can be the cause is as follows:
Anti-gout medications, such as allopurinol
Medications to treat seizures and mental illness (anticonvulsants and antipsychotics)
Antibacterial sulfonamides (including sulfasalazine)
Nevirapine (Viramune, Viramune XR)
Pain relievers, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)
Of course, CLL weakens our immune systems and that can be a factor and there is a thought to be a hereditary factor and/or a family history in the risk of getting the syndrome.
I got my information from the following Mayo Clinic article:
mayoclinic.org/diseases-con...
The interesting thing is that I was not on any medication when that developed. Only thing was the AZ vaccine and oParacetamol after that to help with the fever from it. The CLL treatment started 3 weeks after developing the Syndrome, hoping that will help in the recovery process.
I'm really sorry to hear you're going through this. I've had some mouth and eye flareups . Sometimes I feel as if I've bitten my tongue and cheeks, and gums get sore. Not sure what causes them. Virus? Bacteria? Fungus? Working too hard? Foods? I also get various joint pains that come and go. But nothing as serious as yours, I think.
This Mayo article appears to implicate paracetamol (acetaminophen):
mayoclinic.org/diseases-con...
"Drugs that can cause Stevens-Johnson syndrome include:
Anti-gout medications, such as allopurinol
Medications to treat seizures and mental illness (anticonvulsants and antipsychotics)
Antibacterial sulfonamides (including sulfasalazine)
Nevirapine (Viramune, Viramune XR)
Pain relievers, such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)"
Beyond that, perhaps look at eliminating foods one by one, maybe starting with histamine foods. Many web sites focus on them, and have varying quality advice. It's not like anaphylaxis, where even a few molecules trigger it, and extreme avoidance is necessary. It's often cumulative. For me, tomatoes too many days in a row seems to upset my gut. Of course, any acidic food will further irritate inflamed tissues of the mouth.
healthline.com/health/low-h...
The differential diagnosis list for SJS is not too long:
emedicine.medscape.com/arti...
(free login required)
Some things can be crossed off easily if it's "only" mouth and tongue, since it affects the much of the body in really unfortunate people.
Best of luck,
=seymour=
DivineLight, just to be clear in regard to the possbility of a medication being the trigger for the Stevens-Johnson Syndrome
Tylenol is the best known over-the-counter (OTC) acetaminophen product. It is also a component of well-known prescription drugs such as Darvocet and Percocet.
Acetaminophen also is known as Paracetamol and N-acetyl-p-aminophenol (APAP).
Welcome, DivineLight! Where are you located? Do you have a CLL specialist overseeing your search for answers? Specialists in other fields? Others here may be able to point you to good second opinion doctors. I don't think anything is more frustrating than going from doctor to doctor and not being able to find the cause of your symptoms, or a good approach to treatment. I have, twce in the past, finally gotten an answer from specialists who were in a completely different area of medicine from what they came up with, but who were able to think outside the box. I hope that you find something helpful soon!
I am doing my treatment in Cambridge and have good expert in CLL, but we are talking to bring new specialists into the process
Most probably a stupid suggestion but as this occurs in the mouth is it possible an expert dentist could contribute to finding a solution. So sorry for what you are going through. Just wish we could find some help for you.Hugs
Bubnojay
Sometimes it's a doctor in a completely unrelated field who is able to lookfrom outside and put a diagnosis puzzle together. Not dumb at all.
Really sorry to hear your situation.
Sounds like you are in a good place in Cambridge.
You are on a great CLL treatment. Try to get your haematology results to help you see and mentally visualise the positive effect of that treatment. That is going to take some time so try to be patient. At 32 you have age on your side.
As horrible as it is to do I'd work with your medical team to see if there is any way you can start eating real food again, when you are able. Start just by talking to them about it.
Wishing you well,
Ernest
YES! YES! YES! I developed SJS in January and am now 90% recovered. I still have the (improving )dry sores in my nostrils and skin is almost back to normal. This is by far the scariest thing I have ever gone through. I was covered from head to the bottom of my feet and lost all of my skin. I had been on 6 day course of Methylprednisolon for contact dermatitis when this happened. Funny thing is it was February when I was diagnosed with CLL. In January the lymph nodes in my groin were measured at 2MM. They are now half that size. I’ve had teleconference meetings with my CLL specialist and meeting in person for the first time in a couple of weeks. I’ll be curious to see what my numbers are now that skin issue is mostly resolved. I am on W&W. My heart goes out to you as I know your pain! I wish I had the magic solution for you ,but honestly it was time, patience and a lot of prayer that got me through this. 🙏❤️
Thank you for sharing that with me. Do you know what triggered the SJS? My main problem is my mouth and tongue. The mouth is still very dry and the saliva is like acid, the tongue is covered and receptors are damaged. I cant eat at all juts managing to swallow liquid food. it has been 2 months since I am like this. What doctor helped you to get throw this? What medication did you use? Any idea what might help me what my mouth problems?
It was the steroids that triggered SJS. Sadly my dermatologist told me that was impossible so I was on my own. I did not want to be admitted to the hospital (burn unit)because I felt the risk of an infection with my exposed skin and wounds would be greater there than at home. I have a couple of nurse friends that would come in to check on me and help me wrap some of the open wounds. It was 6-7 weeks into dealing with this that I met with an immunologist and was then diagnosed with CLL.
Hello DivineLight
Sounds like SJS is terrible, worse than CLL, I wish you blessings going forward and a solution to your SJS.
Hello again, just wondering how you are and if there has been any improvement. No real urgency to reply if you are unwell just wanted you to know I and others will be thinking of you and hoping things are easing.Best wishes
Bubnojay
Having MCL and CLL/Trial question
CLL 
CLL symptoms and Obin reactions 
