Asking for predictions from doctors

[warmwaters]

Mr Warmwaters & I were having a conversation about my health status today, the short version of which my health is pretty bad. I've been diagnosed for 6 years, and the trend has been increasingly bad.  We were talking through the practical fallout from that. For example - should I be driving, am I going to need more assistance with certain things, and are there things we should do before I am unable to do them any more?

And he had an interesting idea - why don't I ask the relevant doctors about their predictions of what my status might be in 3 years (in terms of their specialty.) I realize the doctors don't know, but perhaps I could get it in terms of possibilities.

So I wondered - have people asked their doctors for a forecast? How did it go? Any suggestions on how to have the conversation?

I'm at heart a pragmatist, so having a sense of where things are going would help.  I'm still exploring some treatment options, but the possibilities are becoming limited.  So I'm trying to figure out how to make things work as well as I can.

[Joe S.]

I hope you have more luck getting answers than I have.

I have been told that no one dies from Sjogrens. We die from other complications. I am currently in another round of tests, myself. I am wondering about the value of long term care. Please keep me informed.

[Bluebird]

Hello, I asked my rheumy this very question when I was first diagnosed a few years ago. He said right now my disease is just an annoyance, dry mouth and eyes, etc., and won't really limit my life until I am in my 80's. But in just this short time, I've developed small fiber neuropathy, gastric problems, blurred vision and my throat is constantly dry with vocal changes. Gyn issues too. Plus new allergies and swollen glands. It all slows me down and I've had to reduce my work hours. But because I work at all, the doctors think I'm doing great and just keep telling me to be active. So I have not had any clear answers. Good Luck!

[irish]

I am getting somewhat the same issues. Since the first of the year my health has gone downhill. With the stress of hubbies death plus the MRSA infection and trying to taper off prednisone I am sort of a mess. Weak and can't stand up long enough to do much of anything lately.

I do seem to have another infection, some of which is may be in the sublingual salivary glands--again or yet. I have a lot of weakness in my legs and general fatigue is bad. I know that I can't have my flowers in pots outside this year and can't do weeding.

I have better days and I am thinking that it might be when I am on more prednisone, but I can't really tell anymore. I have been thinking that I need to get into an apartment in town so that if I need in home health care it will be easier. However, with a few minor changes I could stay in my own home longer.

The problem when we are not able to get around so well it does't always make sense to make a big move. If we are too weak and unable to get out and socialize in a new area our way of living could end up being worse than it is where we are. What a dilemma.

I have not said anything to my doctors as I just don't know how this will play out. I am just thankful it is summer so there is time. I do know that it is getting harder for me to get up to my son's when I go to treatment. May have to move treatments down closer to home. Still will see my immunologists.

Sorry I talked so long, but you brought up a subject that I have been mulling over the past couple of months. We just don't come with instructions do we??? Hope you can get some answers and ideas from your doctor. The good thing is that in home health care is more common now. I hope your doctor has changed his tune about the severity of the Sjogrens. We Sjoggies need to band together and have seminars to educate the doctors. Good luck. Irish

[susanep]

This very topic has been on my mind as well. Today when we went to see my dad at the nursing home. I thanked God for just being able to make it there, and it's only about 30 minutes away. That is not considered far for where we live in the mountains.

By the time we get there, and then we try to spend at least a couple of hours there, and then get something cold to drink and a bite to eat then to make the 30 minutes back home. It feels like it was a big trip.

This time I noticed from just my last visit there that my lungs were not doing well. Maybe it is the hot weather and the sun. I don't know, but I looked around dad's room thinking to myself that I could see myself there with how I was feeling. Then I didn't like the thought of it just because they come to tell you when they want you to move and exercise, and thought "no way!"

I want to ask my doctors about this too, but don't expect a true answer. I am someone that wants to know what is going on with me.

Hugs,
susanep

[Deb 27]

Possibly a really good experienced rheumy could give you an answer. I think we are all so different and it's hard to predict. From what I've seen, these auto immune diseases can be hard to diagnose and control. If they were better at treating them, they could predict outcomes for us.

I know what you mean though, warmwaters. We need to make plans with our lives. I would also like a prognosis but don't think I am going to get one. My rheumy last week said to me that a disease usually fully develops within the first 3 years and that's usually how the course of your disease will go, be it mild or severe. He was fairly young and I am not sure if I believe that b/c things can flare up and get worse or they can calm down, it's hard to predict!

I feel badly b/c just two years of getting married, I became ill and although I am working, I feel like my illness has been a burden to my husband in some ways. It's definitely been a burden to me!! This is not how I thought my life would go. I always took great care of myself, exercised, watched what I ate and ended up sick anyway! I find myself being very envious of people with good health. Grrrr...............

[quietdynamics]

I am a pragmatist, a 'positive' realist .. "turn stumbling blocks into stepping stones".

Early on, once the thrill of not having some more dire suspected condition were ruled out.. yeah, and the verbal manta from various Drs. and written in some articles... Sjogrens: Dry mouth.dry eyes, "can have an active life" was not 'my reality"... I really wondered at first if I had a wrong Dx, while I literally,daily at home crashing into walls. 

Active life was decimated.. and stumbling blocks were bruising my soul and my family.
Son: I finally got up the courage to asked him (I suspected the answer) "why are you not coming around.. Him: It hurts too much to see you dieing.(Glad he finally verbalized his fear.. I never used the word dieing.) Daughter:"Mom, I am afraid you are going to forget my name." DH looking drawn and worried. So many examples.

Sometimes I wondered if being positive was a form of denial? And sometimes I struggled to stay positive. I would watch videos of people who overcame more devastating life events.. to rev up strength, to be in the present.
But, in fact for me it was a motive, key for survival.. and searching out other opinions (even at a snails pace.) I thought I had really top care, but, in my 'gut' felt this 'just can't be right'.

So now I am being treated with next tier of medications.. and it feels as though I have been pulled back in time .. perhaps 10 years.
So plaquinel was not enough to manage the progression and the rampant course and damage from chronic inflammation. It is now being managed. Inflammation wrecks havoc on our bodies.
DH has diabetes. Some people can manage via diet. He requires insulin injections + diet, etc.
Some people need more. Spectrum.

Lifestyle Changes, aging: That is were we are.
Even without a disease, contrary to Viagra commercials on TV.. lol, we are all going to slow down, have bones aches, and parts wear out.

DH and I have had conversations too. Better to make changes for an easier lifestyle when healthier/able,  than later (and having to scramble and be dependent on family if they are available).
*I am still now almost 3yrs into the estate affairs of my parents. That includes during the very pits of my symptoms.   So it is also about being considerate to family as well. Get everything in order, as neat and tidy as possible.

Sometimes I daydream about selling this home and finding a one story dwelling (even to rent) and get away from the cost of upkeep (as we will become physically less able and need to hire.. like wood trim that needs repair/repainting and now a squirrel has moved it and taken up residence more than 25ft up) save on real estate taxes, home insurance, etc.. and spend those savings on ourselves. 

In a way we are lucky to be monitored so closely; on the other hand some can focus on the 'what if's' that can inevitably be beyond control. Best not to "put ourselves" into a morbid state of mind. My philosophy.
Abuela (Grandmother) was close to 99yrs old. She would take naps. My mother was getting fearful , that the end was near. So it was my job when she did not wake to come out for dinner.. to go check on her.
Went in .. could barely see movement in chest.. Hmmm.
Touch her .. warm.. no response.
Lean in close to listen for breathing..
Her eyes popped open ... and she said " Not yet"
"Bruja!" (Witch) .. and I helped her out of bed.

.. So I would wake even during the worse of symptoms and remember Abuela.. "Not yet" and get up.

Free ourselves to "do life".. not spend time on taking care of "things".
We want answers, and sometimes even the best laid plans are waylaid by unforeseen events.. life.

So going back to the question you posed.
My daughter too asked when I was at my worst, if I was dieing.
So I said to the Dr. "My Daughter asked me if I am dieing, I know we are all dieing, but, what is the prognosis with Sjogrens."

In my case the answer was that change in treatment protocol was to hopefully reverse some of the organ damage. A proposal, an estimate based on studies, experience is all Drs can offer. Then they get that patient who is an outlier .. and Drs. are labelled a 'bad' doctor, when they gave an opinion not a verdict.

It will be interesting to read the responses from your Drs., which will be unique to you personal situation. They, the Drs. do not have crystal ball. And since their understanding,  with AI, is 'evolving' .. I have no idea of a Dr. response.

[warmwaters]

Thanks for the responses so far. This is hard stuff to talk about!

So here's the deal ... I know I'm not dying (I mean any time soon). I'm in my late 50s.   I'm already in a single story apartment because I can't do stairs, mr. warmwaters does all the household stuff, and I am often so tired I can't drive, take a short walk, etc.  And I have a lot of pain. It's getting hard to even get to a doctor's appt.

I don't like feeling dependent, but I am. So I'm trying to sort out mobility scooters and driving, and can we take a vacation, and how would we do that. And what do I do if mr. warmwaters has to take a 2 week trip for work? 

I do have a great rheumy, and I can imagine having this conversation with her. But I also need to talk to neurologists and other specialists to try to get an assessment.

Maybe if I go concrete - How likely is it my back pain will increase over the next  3 years?  How likely is it that I'll lose more function in my right leg in the next 3 years?  and so on, depending on speciality.

It's almost like doctors always want to see the hopeful side, but sometimes we need the honestly to make good plans.

[warmwaters]

I realize I didn't say how thankful I was to those of you who've responded about so  honestly about how it feels to be facing this place where we're not sure how we're going to keep going.

It's a funny place - Our lives aren't in danger (for the most part), but our living our lives is.  The usual grit and determination stories about overcoming adversity don't really apply - if we had the energy to do the things that could help us (like exercise), we probably would.   I use to muscle my way through whatever I needed to do, and rarely took "no" as an answer for something I thought was important.  But that really doesn't help now.

Hi guys, we're in a funny boat, but at least we're in it together!

[Bluebird]

Warm waters ... I like sailing 

[warmwaters]

Warm waters are my happy place - whether it's a bathtub, pool or the ocean.  So it seemed like a good name.

[sixty]

I have chronic moderate kidney disease with a gfr of 38 and it's due to sjogrens.  My doctor hasn't told me what to expect and I really need to know how it could play out.  I guess there aren't too many warning signs with kidneys so what can I be looking for in symptoms?  I see him on Friday along with new bloodwork. 
Also, I asked my rheumy about restasis and he told me he doesn't like the drug because it only addresses one thing, dry eyes.  WTF?  So do most drugs!  Just because it addresses one thing seems to be a bad reason for not using it.  I wonder if I could just get a script for cyclosporine.  My dog uses it from the vet.  Maybe I'll try it.

[Nymph]

I think that asking for specific predictions is going to get you more info than general questions, and that asking all you docs is going to give you a better picture than asking just one. I plan to have a chat with my neuro about my current issues. At the same time, my dad is a neuro and I know what he would say from 40+ years of experience: "50% get better. 50% get worse."

Doctors aren't prophets and they really can't know exactly what you're going to be able to do or not in the future. Also, while it seems slow and far off, there are treatments being developed that may make a big difference for us someday. I know an older lady who has had RA longer than I've been alive. She thought that she would never walk again, but now she can. She still has many limitations but they are not what she could have forseen. Her doctors could not have forseen that, either.

I ask myself these questions ALL the time. How should I plan my career? Should I move out on my own? If so, should I stay close enough to family so that they can help me? I would love to be able to have a frank discussion about this with my doctors but don't really see that happening. That's why I'll stick to symptom-specific questions for now.

[long time dry]

Sixty, do you have an ophthalmologist or optometrist?  You could ask him/her for a prescription for Restasis.  I got my prescription from my ophthalmologist and he's glad to provide it.  My rheumy doesn't object and might have prescribed it for me, but I never needed to ask him.

[cari]

 I asked my rheumatologist this question.  He said that it was a condition that needs to be managed like diabetes. He said that I'm healthy and sometimes these conditions go into remission.  It also seems to be a condition that can't be predicted.  He said that at the moment I could develop anything and seem to be at the beginning of this journey, or it might not develop at all.