Jo

Either I've had peanut butter in my ears or something.....but yesterday, for the first time, I heard us referred to as "terminal."
Guys, are we terminal?

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Who said that? Terminal and Chronic are completely different. Terminal I believe has a very short progression to end stage. I asked my Doc that question after I overheard my sister refer to what I thought I had in the beginning as teminal. UIP? Fast progressing with NO treatments. Now Scleroderma with treatments, Ill take it. That must have upset you. My Doc sais No to terminal. Yes to chronic life long , possibility of remissions. Hard road ahead but not a dead end. What do others think of this?

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Chronic yes, terminal no. In general, terminal illness has been a term used for people expected to live less than 6 months. The only part of terminal that fits is that there is no cure for us. People use incorrect terminology all the time, so always do your own research in addition. Glad you asked!!

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Hell, no. I haven't heard the word "terminal" applied to scleroderma since the very first time I heard of the disease almost 50 years ago. Which is not to say that it can't kill you, just like heart disease or diabetes can.

If the people around you are giving you this kind of misinformation, you need MORE peanut butter in your ears (watch out for hungry dogs, though).

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If it is one of your medical team saying terminal, kick them off the team. Not true. Misinformed person.

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It was the TV. Scared the hell out of me. Thanks, guys. Hearing that sort of threw me over some edge. Been nothing but dr. appointments and/or tests every day last week. Skin cancer surgery included. 2nd one was on the WRONG spot. YES I have a new dermatologist. Hysterectomy is next. Just going through so much right now and feel like crap on top. Everything is just wearing me down..........
Thanks a million, Guys.
I keep praying for us ALL.
Oh, I heard somewhere on this site that there ARE indeed meds that counteract our others. Battle fatigue. What are those?? I've asked my doctor three times............I get no answer.
I can count on your honesty here.
Thanks, again.

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I agree with the others. Scleroderma is not terminal. It can be life-threatening and people do still die from scleroderma despite the better medications that are available today. However, many, many people with scleroderma live pretty normal lives both in quality of life and how long they live. Some of that is luck, some of it is having a good medical team and the right medications, and some of it is how you care for yourself (diet, exercise, stress reduction, attitude, etc.)

If you've looked at the scleroderma page on the Johns Hopkins Rheumatology website, you'll see that there banner reads "Incurable does not mean untreatable."

If your doctor doesn't answer you when you ask about medications, then I think you need to go back with some specific requests and give him one last opportunity to either prescribe medications to address your symptoms OR explain to you why he doesn't feel medications are appropriate for you at this point. If you don't walk out of there satisfied that your doctor is providing you with good care, then you need to find another one. There are cases where medications either wouldn't work or where the risks outweigh the benefits, so sometimes you have to be prepared to accept the fact that a particular symptom might not be able to be treated with drugs. If that happens, then it would be great if a doctor would give you ideas on alternative ways to improve your symptoms (diet, massage, physio), but often they don't. If you hit a dead end with your doctor on a symptom that is really bothering you, try a naturopath, a massage therapist or chiropractor, a psychologist, or whatever other type of specialist might be appropriate to address it. Medical doctors are important, but they aren't your only option.

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I have CREST & Sjogrens. It is really hard to find a good and caring doctor. My former internist said, "Oh, you JUST have CREST" and implied it was no big deal. Well it is a big dealt me. At my last yearly with a new primary care, she did not listen to my heart or lungs, didn't check my swollen neck glands but did remind me she needs my Advanced Health Care Directive. I had filled out a health update saying I felt dizzy & tired & not well but this wasn't addressed except for a CBC which does show some blood problems when I look at normal values but she did not seem concerned at all. At least my rhumatologist seems to care, listens and will even answer my email so at least I have one caring doctor. My insurance allows me to change primary clinics once a year so I will wait until January 2013 I guess.

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When I was diagnosed, I asked my Doc if I was terminal. He said that I will die from something but it won't be Sclero and we both chuckled.

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dear jo,for pete's sake no! diagnosed at 19,now 68. conventional treatments made me feel that way,this is chronic,try to eliminate all depressants,including medications that cause it and alcohol.don't sign up for anymore stress than you can handle.marijuana was the turnaround medication for me,helped me gain remission and stay fairly stable despite problems.think positive regardless whats going on,and always think heal thyself.look into the therapeutics of marijuana,believe it's legal for medical use in nj.best of luck

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How can you smoke pot if you have lung disease? I am a very sheltered person so dont laugh if this is a stupid question. I gave up my wine and anti anxiety doesnt quite cover my level of stress so Id like more info., Just curious of course. I want to know for the future, not knowing how bad things may get i want to know my options.

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I often wonder the same thing. Yet I've heard studies say that marijuana causes little lung damage. AND, if it helps one's appetite, I say why the hell not. We need to eat. I can't say that a single thing has made me hungry in months. I eat mechanically and I force it down. I say thumb's up to pot. I gave up my wine. But I don't like it.

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Maybe we can get a good brownie recipe!! HaHa. Leagally of course.

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I too would like to hear more about using marijuana when for many us, lung disease is probably the aspect of sclero that will kill us. I once heard smoking marijuana is 10x worse for the lungs than cigarettes...but I've never done the research so would really like to hear more!

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You don't need to smoke marijuana. You can eat it with the same affects without drying out your eyes or irritating your lungs.

Marijuana does have an antimotivational aspect to it. I don't need anything else to make me tired. Used to be a pot head in my younger years and worry that if I use this drug, I will prefer being stoned over learning to deal with my life.

That being said, there are a lot of positives to medical marijuana. Not legal in my state of Minnesota.

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I was dx 11 years ago.i was told then that 90% of people will be terminal within 10 years. i guess i'm in my bonus year.
How I really feel is that I'm not afraid of dying but I am afraid of my day to day living.
There are so many "crazy" symtoms that are constantly going on that I cannot for 1 second feel comfortable or not incredibly nervous.i also have been diagnosed with Insomnia.I have tried Everything mentioned in the posts ,including capsule form of medical mariguana.It mostly helps smooth out some" rougher edges" of pain & nausea.i am thankful for that.
i guess what I'm really trying to say is that I live in constant fear.Stupid,maybe,but true.

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dear jo,phoebe,ljenks,maggi may,thanks for your interest in medical marijuana.first of all i would suggest a little research.my case is mentioned in the revised and expanded edition of Marijuana the forbidden medicine by lester grinspoon,m.d. andjames b.bakalar.dr grinspoon is i believe the last living investigator that was authorized to research medical marijuana back in the 60's and 70's at harvard university,a remarkable man.also i would suggest clicking on patients out of time as a beginning.gee i wish i had this wonderful site,information when i was diagnosed in 1963.just after being diagnosed with acute scleroderma of the esophagus at st.elizabeth hospital in 1973 and the prognosis of the removal of my esophagus and replaced with part of my intestine i had a stroke of luck by meeting people where i worked at general electric that suggested i try marijuana because it gives you the munchies.i had lost 30 lbs and couldn't swallow solid food and tried it. it made me hungry and i gained some weight and have never stopped smoking it since thank god.this certainly wasn't the end of my troubles and in 1978 got my first dialations of my esophagus.later found out 18% of the people that have that operation don't survive.i have a affidavit from the surgeon that states my remarkable remission after my use of marijuana.my struggles didn't end there,they continued until i got adamant and completely got of prescription drugs,i slowly over a period of a couple of years got my mind and motivations back only using marijuana.it was the seven controlled drugs i was prescribed each and every day that took my mind and motivations away,not marijuana because iv'e had a fruitful life since.iv'e had nearly all aspects of the disease,raynauds,esophageal,arthritis in the hands,severe pain,kidney failure,heart failure and many other querky symtoms of the disease and no problems with my lungs.all of my doctors,i mean all including my kidney and heart doctor have stated keep right on doing what your doing it's working. continued

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continued,marijuana is the best antiemetic there is,i am only stating the specific symptoms of scleroderma that are aided by the use of marijuana.an antiemetic needed when we develop esophageal problems,gerd. it is the best treatment for raynauds as it relaxes smooth muscle which incircles our veins,arteries,capillaries,etc,which allows for better circulation.the pain of scleroderma and arthritis is best treated by marijuana than the harsh treatment of opiates and aspirin type drugs that tear up your stomach and esophagus.a treatment of depressive and anxiety reaction to the disease.i personally believe scleroderma patients suffer from spasm,when you have a sudden raynuad's attack set off by cold,stress,emotional stress is it a spasm?i believe so,a spasm of the veins,arteries,capillaries which cause constriction and raynaud's and possibly PAH pulmonary arterial hypertension.research definitely needs to be done using marijuana in the treatment of these specific symptoms. as the drug enforcement administrations own judge,judge young stated in his decision to reschedule marijuana in 1988 that marijuana was the safest drug known to man.the government has been lying to us for years about the therapeutic value of medical cannabis,marijuana.it is the future in the treatment of scleroderma and pray that the government reschedule marijuana from schedule 1 to schedule 2 so that research in this area can be done.we need truth from the government and research.thank you for listening.

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dear sands,i have also been prescribed marinol,capsule form of marijuana.it helps with nausea but thats it. it will help your insomnia and help you for sure with your nervousness.and don't let anyone fool you the smokeable kind is best.legal or not in your state,what is more important than your quality of life.i once had the honor of helping a lady from minnesota with scleroderma that the court was threatening to put in jail because she continued to use marijuana for her treatment.the court said there was no evidence or precedent that marijuana was used for scleroderma. i sent her affidavits from my doctors and myself to give to the judge and they stopped bothering her.

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You heard it on TV? Would that have been an episode of "House"? They used the term Terminal in relation to Scleroderma. Threw my into a tizzy too. But I got over it.

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I'm really glad I missed that episode. Would have made my tizzy even worse.

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