Hi all, I haven't been on here in a while. Things have been about as great as they can be in a flare. I saw a new rheumy yesterday, it was actually a pair of rheumys that see appointments together. I guess two brains are better than one when it comes to Lupus. I liked them a lot and they had great ideas but I never get used to hearing that there are some things they can just not fix... ever. They left me on my Benlysta and are increasing the frequency to once every 3 weeks instead of 4, they are increasing my gabapentin quite a bit because I refuse to take prednisone anymore, and they are leaving the rest of the cocktail pretty much the same. I was told that unfortunately there isn't much they can do about the constant exhaustion other than tell me I am doing to much and that there are some symptoms that will never go away but their goal is to make them more manageable. They want to see me back in 6 weeks which just shows how much worse things have gotten, I have always gone in every 3 months. Will it ever get easier to hear that they will never make you better. I am so tired of living in this state of limbo, existing, but not truly living. Ah well onward with treatments, maybe someday they will have a cure.
Yep pretty much learned a long time ago- the docs can keep you alive but they cannot make you better and the drugs can be a toss up between the symptoms from the illness and the side effects of the drugs. It could be worse though I have been on twice weekly visits and every other day blood draws at some of my really low points However I always opted for the side effects of prednisone over just trying to wait it out Side effects are tremendous but worth it I guess when a remission- partial or full is finally achieved Not worth it during the full impact of high dose - but later if I could tough it out We all pray for a cure
Interesting idea, two doctors at once… I have been hearing that line a lot lately, except my doctors are not even finding many solutions for the pain, besides “sorry, nothing can be done”. I tried gabapentin, Lyrica, and am now on Cymbalta, nothing really helps the neuropathy pain. The fatigue is not so bad, so the hydrooxyclorquine seems to be working. My first Rheumy tried Pednisone for the pain, but it was a very small dose, didn’t seem to help.
I always think it must be difficult to be a Rheumy, as they have so many diseases that they just don’t have a clue about! I asked my Neurologist the same thing, he said that at least the Rheumies have a “system”…this might be the reason for the double teaming, they can at least support each other, when telling you there is nothing that can be done!
I really understand the frustration! When I resigned to the fact that I would have fatigue, pain, and have to take medications forever, I began to feel more peaceful. Acceptance is the path for me. Last year I had breast cancer and weathered that storm and my favorite quote was “it is what it is”. That is how I make it through! Good wishes!
Thanks, it helps to hear that I am not the only one that hears the line "there are some things we just can't fix". I really liked the 2 doctors during the visit they were bouncing ideas off one another and kept me involved in the conversation the entire time. One Dr. was a third year resident the other was the head staff doctor for the hospital, they said this is how all appointments go at this hospital, 2 doctors for every patient in the rheumy clinic. It was refreshing to hear the residents new ideas and the staff docs older methods being mixed so well that they seem to think they can get me some relief, even if it is small and temporary, and when that isn't working anymore because of the progression of the disease then they will just change things up again. For the first time I felt like my concerns were being listened too and even though there are some things that they cannot make go away they were sympathetic and sorry for that and would do their best to fix what they could. I will never get used to the idea of not ever getting better but at least I feel like now I have a team that will actually care if I am getting worse.
Does make a nice balance between the conservative older doctor and the younger doctor that is up on the latest findings. I first had the conservative Rheumy, then she retired, then I got the young energetic one second, both together would have been interesting…
Good luck with your treatment!
Many times a good Rheumy will serve as a teacher for an intern which is a great way to learn outside of the class room. I always allow other professionals willing to learn because there can never be enough people aware of this disease.
That said there are limited options for treatment. I am not even a candidate for Benlysta so even more limited options.
Just remember that you can advocate for yourself and look at things that make you feel better i.e. bed exercise, aquatherapy, light stretching, warm baths, etc. I like Ashwagandha root which has decreased some of the swelling of the joints. It’s also really inexpensive and easily available at Ayuervdic stores. Reasearch is promising and I have been able to halve my Plaquenil and decrease my Prednisone by 1 mg. Doesn’t sound like much, but it is a great step.
I’m sorry that you are having difficulty with the knowledge that you will always have this, but sometimes knowledge is power. Have a super day!
Heather, I give you a lot of credit for not blaming the doctors for not being able to fix everything. I have been doing a lot of research on lupus lately, and have read on many sites that it is not unreasonable to expect a cure in your lifetime. Lots of progress is being made. In the meantime, please share your doctor recommendation on our "Recommend a Rheumatologist: discussion. We want as many good doctors on that list as possible. All the best to you!