Living with scleroderma and pulmonary hypertension and inactive non-Hodgkins lymphoma.

[SherrySanford65]

I was diagnosed with CREST when I was 35 years old. I was diagnosed with pulmonary hypertension in 2013. ( twelve percent of scleroderma patients will get this) and non Hodgkins B cell lymphoma in 2016. I have progressed into full blown scleroderma and have noticed amarked change in my overall well being. I am 65 now. My Reynauds is much worse and I am fatigued on a regular basis. My nausea from a distressed GI tract is almost constant. The only relief I get is from cannabis edibles. Even then, food is disgusting to me and I during the last two years I have lost 60 pounds not trying. I’m 5’ 6 1/2 inches and I’m down to my high school weight which is 120 pounds. I look old and gaunt. The weather fronts that come in weigh heavily upon me. Any suggestions? Taking meds for all my symptoms but still feel awful. Doctors can’t seem to go much more. Help anyone?

[Hidden]

It sounds as if your quality of life is pretty lousy and I’m sorry to read of your problems. I too have a disgusting taste and many foods that I used to enjoy taste abhorrent to me now.

My diagnosed diseases are primary Sjögren’s with secondary Raynaud’s and Hypothyroidism.

Do you have Sjögren’s with your Scleroderma? This can often cause a horrible taste or absence of taste due to the dryness - adding to problems swallowing and digesting and affecting the small and large nerve fibres and the autonomic nervous system. Having Ro antibodies for Sjögren’s also increases the risk of non Hodgkins Lymphoma significantly for sufferers.

If this seems like a good fit for you then you may find some relief from saliva stimulating gels and pastels and good eye drops and nasal moisturisers. Keeping a plant in your room and increasing moisture levels while the central heating is on so much would likely also help - some find humidifiers very useful.

[SherrySanford65 in reply to Hidden]

I don’t have Sjogren’s that’s for the input.

[tanya1981]

Hi Sherry, I am so sorry to hear of all your pains; you really seem to be struggling here. Where do you live and who’s the doctor looking after you? I would certainly recommend Dr Denton in the Royal Free Hospital in London - his scleroderma unit offers a very tailored approach that you may benefit from.

How did your Crest develop over the years? Were you always taking medicine ever since you were diagnosed?

I was also diagnosed with CREST 18mths ago when I was 35 and I would like to know what I can now do to limit the impact of the desease Over the years to come

[SherrySanford65]

I actually live in the US. California to be exact near San Diego. I have been on several medications over the years, but basically now I use cannabis for depression and pain. It has made an overwhelming difference with regard to my mental state and pain mgmt. Im on Lexapro also. I take Adcirca and Opsumit for my pulmonary hypertension and my lymphoma is non active. I’ve seen an internist for scleroderma for 30 years now, and my lung doctor at UCSD San Diego treats my pulmonary hypertension. Last visit my heart was normal size and was doing well in this area. I have ongoing visits with the oncologist. My CREST is into full blown systemic scleroderma and feeling quite terrible with nausea now most of the time. Lots all sorts of weight. I’m 65 now and weigh 120 lbs 5’ 6 1/2 “. Too skinny but no appetite. Drink tons of protein drinks. Weak all the time with very little energy. I don’t know if it’s the scleroderma or the PH or a combination of both. Also my body is fighting the lymphoma. Don’t know of anything else to do from here. Seeing a rheumatologist when necessary. Anyone have any new ideas?