LUPUS UK
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Lupus/UCTD, Chemotherapy and Research

Hi all,

I'm just wondering if anyone here has had a similar experience of developing a connective tissue disease (Undifferentiated, Lupus, Sjogrens or otherwise) about 5 years after chemotherapy for any kind of cancer?

My GP referred me to a neurologist as my first port of call last year when my fingers and toes were all pins and needles and I'd had 2 shocking experiences of overheating and thinking I was going to spontaneously combust. They included brutal nerve and burning pain for 8 hours after a simple hour in the sea (and sun). By the time of the appointment, I now could not be in the sun for more than 5 minutes without it scorching me, a new strange experience of Raynaud's with numbness kept recurring, also Chronic Urticaria (anywhere from 3 -50 hives at a time over 6 months) and tiny erratic blistering of my fingers. My ANA blood result came in just before the appointment and was a high positive.

Due to the skin involvement and the positive ANA, the Neurologist was convinced I had SLE or Vasculitis (Vasculitis has now been ruled out). He explained that a patient who'd had chemotherapy could rarely develop an autoimmune disease approximately 5 years later. It was exactly 5 years on for me. So, firstly, I'm wondering if there's anyone who's also had this experience? Secondly, if anyone knows of a way in which I can contribute to research? Thirdly, if not, if they'd like to help me find a way to flag this up and contribute to research?

I also want to say how grateful I am for this website. It has been an enormous help to me through this quagmire of body malfunction over the past months. Just being able to read about others going through their own mysteries and witness the plethora of support offered through kind, experienced words and the availability of numerous reading material resources has given me a lot of strength. So thank you Lupus Uk and all who contribute.

Panda

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Hello panda

I'd just like to say how sorry I am that you appear to have developed UCTD/ lupus after having cancer treatment!. What an awful thing to happen to you but do agree that it would be wonderful if you could be involved in research in some way as this is such a rare occurrence thankfully!. Make a positive out of such a terrible negative would help!. A thought of how this has happened is also that these auto- immune illnesses can be triggered by stress and you don't get a more stressful situation than fighting cancer!. I do hope you are in remission now and you get some good responses to your post. I'm so glad you have found this forum helpful and I hope your UCTD is being successfully treated now. It might be a good idea to see a dermatologist because of your skin. Are you going to be referred to a Rheumy or stay with neurologist?. Take photos of your rashes and keep us posted. X

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Misty14, thank you so much for your encouraging reply. You are a lovely bunch here.

I was transferred to Rheumatology and have seen my Rheumy 3 times, each with picture book in hand. You are right that it helps a lot to take photos. I'm Ro+ which seems to be behind the extreme sun sensitivity. And I don't even know what to do with that! It's affecting me through the windows now too. I have always loved the sun; and being in the sea whenever possible. Learning to surf was what was truly healing me after cancer. If I went in with fatigue, I'd come out high and happy. But now I'm suddenly told, "No sun and no sea for you madame!" This website was very helpful with tips for this and now I am also coming up with my own ways around this by going in cloud cover and rain with zinc block, neoprene hat, etc. But I find I still pay for it when my nose begins to glow and my nerves start fasiculating. Also, I don't really understand what the UV rays are actually doing on a deeper level, despite reading masses about this. The idea of the sun being dangerous is just not computing properly. Though I'm aware I'm afraid of it now like I've never been before.

I've had tests for carcinoid tumours and various paraneoplasms due to previous cancer and because some of the new symptoms were imitating cancers. But as it stands now, I'm under the UCTD umbrella for the time-being. Shamefully, and much to my husband's horror, I actually wished it was cancer again, so that it could potentially be a straight-forward excision and my body would go back to normal..! This disease is a new kind of nightmare. I don't know what's coming at me one day to the next. And there's no one to call, unlike with cancer when appts come thick and fast and your GP always responds with sympathy rather than skepticism. I note that stress trigger you mention too -- like how are we supposed to avoid that...?!

I am on meds for UCTD now. Hydroxycholoroquine for 3+ months and it's made a difference. Rashing is much less; minor swollen joints went straight back to normal. Next appt. in a couple weeks where I will find out if I'm to go on Mycophenalate. I was given the brochure for it at my last appointment.

I have been to a dermatologist for urticaria biopsy, which just proved it was urticaria... I'm to go back if I get the all over arm rash again.

Thanks again for responding. I really appreciate it.

Panda

x

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Hi panda

I'm really sorry your suffering so much with sun sensitivity and how much it's impacting your quality of life!. Good for you not wanting to give up on surfing etc but it's really tough isn't it?. Do you know about the Eclipse support group for extreme sun sensitivity sufferers?. They have info on special light reflective clothing and give great support as an adjunct to lupus U.K. You will find them on their website or in the lupus uk magazine.

I understand you saying you wished your health problems were cancer not a difficult , unpredictable illness as you have experience of having cancer treated successfully!. I'm a fellow UCTD sufferer of 31 years and just want to say that given time you will find the right treatment options that will help your symptoms. I'm glad that Hydroxy is helping you and that you are being seen by a Rheumy!. This needs to be done regularly as the illness could change into a particular connective tissue disease rather than trying to be several different ones!. I've stayed at UCTD all this time but I think that's not very typical!. I'm glad you've got your album of rashes photos!.

Good luck for your Rheumy appt in a fortnight. You might like to ask them about Mycophenolate as I don't know if you know this but one of its side effects is skin cancer!. As someone who has battled cancer I don't know if this drug would be suitable for you!. It is a better tolerated immuno-suppressive . I took it for 8-9 years and it helped me greatly. If you do go onto it and have any questions please feel free to ask me and I'll try to help. Hope your appt goes well anyway. Keep us postedX

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Hello Misty14,

31 years!?!!! That is an awfully long time to have been managing this. You give me hope that the lifetime of this ahead can be handled.

Thanks for the reminder of the Eclipse section! I knew I'd read about this somewhere, but am in desperate need of a refresher with the sun out and temperatures going up. I've got 2 days in the car ahead and am the sole driver in our house. I bought some 50 factor arm covers last year after blistering through the windshield from a 25 minute drive. You've reminded me that I need to wear them!

Thanks for the well wishes for the upcoming appt. I already do have questions about Mycophenolate. I will be back with those in a new post soon. I'd love to hear your thoughts particularly as someone who's been on this drug for so long.

What a great resource this place is. I hope you're doing ok these days Misty14. Thanks again for your responses.

Px

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Hello panda2, I had chemo and radio therapy for breast cancer in 2008. In 2015 I started to itch terribly and suffered really hot sweats, which I put down to the menopause I also got very breathless. Any how after many visits to the doctors, then a spell in hospital in 2017, I was finally diagnosed with Dermatomyositis, an autoimmune disease.

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I also had beast cancer in 2005...BLM reconstruction no chemo, but AI's to stop estrogen..a lot of stress both physical and emotional..I have been getting rashes that were called..Idon't know to lichen planus..last March 2017 I had DIEP flap to relieve myself from the pain of reconstuction implants...Doosy of a surgery with complications..THEN I got the worst ash ever! My ANA was out of sight biopsy of rash..Lupus..subucate or discoid(I have heard both) I was also tested for dermatomyositis..test results negative....How are you doing with dermatomyositis???

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Hi, had a really bad flare September last year, now on Prednisolone and methotrexate which is bringing it under control. I get muscle pain and have constant tingling in fingers and toes and struggle walking as breathing still a problem. The doctors did think I had lupus to begin with, I had the rash across my face, but also my chest, arms and back. I too had reconstructive surgery, diep flap with complications, had about 13 hours surgery that day. It didn't work out so had the muscle from back plus implant, a whole lot of surgery over 4 months, so get the physical and emotional stress. You count the years of being free from cancer to get hit with something else. I hope all goes well for you

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Oh DEAR VonnieD....my complication was my stomach opened ..wet dry dressings them wound Vac..then developed the bulge...Had that taken care of after my Lupus flare Jan 9.....My belly bulge is beginning again...perhaps Lupus?? Maybe my skin muscle etc just isn't hearty enough... My DIEP was 10 hours

What test did you take to determine Dermatamyositis??

And yes..I turned 50 in 2005...my husband and I were having a good time together because our youngest was a senior in HS...them BAM...A lot of good years overshadowed

I had rash on chest back hands not face..that is why I was also tested for Dermatamyositus...I hope your medication helps with your symptoms Xx

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Oh gosh leslieliesel that sounds horrendous, I hope it's all sorted for you now.

The rheumatologist I saw was pretty sure that I had Polymyositis my cpk levels were really high I had bloods taken regularly, the MRI scan on my thighs confirmed muscle inflammation and damage. He said he didn't need to do a biopsy. When I saw the dermatologist she confirmed the derma side of things. I had lots of photos taken of face, chest, back arms and nails with a special camera. Really interesting seeing the skin side of things close up.

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Do you have physical therapy to help keep your muscles the best they can be?? I was told if my Dermamyatosis (sp?) test came back positive, I would still be given Hydroychloaquine...is that what you take?? Xx

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Hi leslieliesel

I don't have any physical therapy at the moment, my rheumatologist didn't want me to start anything until the inflammation was under control. I currently take Prednisolone and methotrexate. I've noticed that there is different meds for treating, I suppose it depends on your medical history (and consultant) as to what is prescribed. I hope everything is sorted out soon.

With best wishes

VonnieD x

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Hello VonnieD

Yes there are different medications..my Rheumy says if the Hydroxychloraquine doesn't do the tick for me, next medication is methortrexate....I also took prednisone(I live in the US) in the beginning,,,that always makes me feel great...but I hate the stuff..I was on it long enough to rid myself from my horrid rash.....so far the Hydrox..... is good enough...

And yes, I hope you get sorted out soon also

Xx

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Hi Leslieliesel,

Your rashing sounds awful... And the BLM with reconstruction... Then to change from implants to flap! Gosh...

Breast cancer sure is everywhere. It's what I had in 2012. I also had a bi-lateral mastectomy and reconstruction with implants. Not ready to change them just yet and your story doesn't compel me to.

I have read about a link between Tamoxifen and auto-immune disease. Is that what you were taking to block oestrogen? Not that I know anything more than that...

Hoping things are a little easier now??

Panda

x

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I took Tamoxifen for 2.6 years..had my ovaries out and switched to an AI Aromatase Inhibitor for 5 years.....The DIEP flap was big, but worth it!! I felt as if I was carrying tight TIGHT hard balls on my chest...Now I feel like me..soft squishy not tight.....so weird, I am a hypochondriac my fear was cancer and Lupus..how about that???!! Face my fears, riht? xo

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: ) Maybe that wasn't hypochondria at all, but pure instinctive premonition anxiety...?

I SOOOO understand the TIGHT hard balls on the chest feeling! That's exactly what mine feel like now! And you know how bras don't fit and have a little crumple of material where the nipple should be. And how you can flex your breasts because the muscles are on top. Did the flap actually mean you could have the muscles against the chest wall again?

x

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Yes all very uncomfortable and emotionally unsettling...Oh how I envied breast bounce/movement..and I don't mean the horrid muscle flexing movement..that was lovely..ugh...Yes, the muscle is repaired back to the chest and soft squishy belly fat is put on top of the muscle..I didn't have a lot of belly fat so I am a lovely B cup...sure looks and feels better than my bowling balls sticking out...that I NEVER got used to.....And I kind of agree..perhaps it was a premonition anxiety....But whatever it was,I went to get checked out for a small lump 6 WEEKS after a CLEAN mammogram ..if I was someone with no health anxiety, I would have waited out the year for my next scheduled Mammo....YIKES........

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Too right about where you'd be if you didn't have some healthy health anxiety. ; ) YIKES indeed! I also had a breast check (by GP, not mammo) only 6 weeks before my lump suddenly appeared overnight, which was given the all-clear. Strange how these things happen. Good that you listen to yourself. I'm going to think about that breast change you've had. I am similar build, not much fat, but there is some belly fat I'd be willing to donate upwards... : ) I've got a consultation in August, but at present I feel I really need to get this autoimmune thing under control first.

Px

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Hello VonnieD,

That breathlessness and itching sound terrible! As well as hospital visit... So glad they were able to get your flare under control. Interesting about how we put things down to menopause. The chemo wiped out my reproductive system in my early 40s and so I thought (as did Gps) that everything was menopause too -- particularly the terrible sweats. At some point it dawns though that something further is not right here...particularly after taking HRT and the sweats stop for 2 years. Whey they came back, along with a million other symptoms, including the tingling toes and fingers that you experience, I got suspicious. Do you think the chemo, or cancer even, could have been responsible?

I think a lot about the fact that chemo pummels the immune system so that it's underactive. I went into Neutropenia each time despite the growth factor jabs. And i ended up hospitalised for Sepsis once. It's interesting that now with AI diseases, the immune system is overactive. Kind of like it's experienceing a PTSD reaction.

I understand exactly what you say below about counting the years you're free from cancer and then getting hit with something else.. I'm sorry this is your journey too. Thanks for sharing.

Panda

x

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Hi panda2

I think the cancer/chemo is responsible for everything that is happening now. In asked my doctor if she thought it was the cancer but she was non committal. She just said the immune system is a complicated thing. My feeling is when any part of your body has suffered any sort of trauma it has links to future illness.

I am one of five girls and the only one who had had cancer and now dermatomyositis. In my teens I fell down a flight of stairs from top to bottom with my left arm outstretched hitting each step on the way down and dislocated my left shoulder. In my mid 20's I had to have an operation to cement my shoulder in place, the fall caused a weakness where the joint popped out at the slightest knock. In my 30's I began to suffer joint pains and developed a rash across my face. My GP at the time suspected Lupus, but this wasn't followed up and I eventually got better. At 47 years old, breast cancer, left side now at 56 with dermatomyositis. I can't help but think it is all connected in some way.

Let us know if you find a research programme.

I hope all goes well for you and that you find relief from your symptoms soon

With best wishes

VonnieD x

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Hello VonnieD,

Gosh, yes, that's some trauma alright. Terrible thing to have happen in your teens. You must have always wondered if your arm would fall off or be taken off... Then such a fate to get cancer and now this autoimmune problem. Ugg...

Thanks for your thoughts on what you think is responsible. It's so interesting. And I'll definitely post back on this site if I find anything research-y that suits any or some of us.

All best, Px

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Hi Panda

A friend sent me the link to an article that was published in the Guardian last month. Interesting reading re link with cancer treatment.

Joy

theguardian.com/science/201...

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Hi Joy,

Thanks so very much for this link! Fascinating read. I didn't know they were trialling treating cancer by inflating the immune system now, as it was done in the opposite direction while I was going through treatment.

I see they are noting the immune system links between auto-immune disease activity and cancer treatment. So this is a start for how I can find a way to contribute to research, I think. I will look into trials in London for a start and see if I fit in any categories.

Thanks again, Joy.

Panda

x

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You are welcome Panda. Yes I agree fascinating indeed!

all the best

Joy x

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