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Saw the hematologist today and she confirmed it is indeed familial amyloidosis. They sent off blood for dna sampling to determine which strain it is. In the interim, she prescribed Dolobid (Diflunisal) and Neurontin. Does that sound right or anyone familiar with these drugs?
Depakote Gabapentin Chronic pain Seizures Pain Neurontin Lyrica Depression Liver transplant Amyloidosis Stress
Dolobid is a NSAID- non steroidal anti-inflammatory agent used to pain, inflammation. Neurontin, generic is gabapentin- is a medication with many uses- and one of them is nerve pain. My late daughter was initially put on neurontin.
Thanks for the info, I was told that the Dolobid "may" halt or stop the progression and the Neurontin "might" help with the neuropathy. Did the Neurontin help at all?
Ken:
yes I am familar with the meds. My husband was on the diflunisal . A trial was being done for it at the time however he did not want the chance of getting a placebo so a researcher in Knoxville gave him the prescription as it is a drug which was originally used for artheritis (sp?) He stopped using it when he joined another trial using a different drug which has also shown to stop the progression. They will submit it to the FDA for approval .
He has been on it for 6 months with 6 more to go and is doing good with no progression. He is on Lyrica for pain which is similar to the other one you mentioned. Hope this helps. We are going to Chicago for a 2 day meeting with several doctors from both Mayo and Boston and also the two drug companies who are sponsoring these drugs. Contact Muriel if interested.
Joan
Ken,
The principal investigator for the diflunisal trial at Boston is Dr. John Berk. You can call Boston at (617) 638-4317 and talk with him directly. A member of the Atlanta group is participating in this trial but may be leaving it soon in order to receive a liver transplant at Mayo Jacksonville. He was recently approved for transplant but is still tying up the loose ends such as finding a place to stay closer to Mayo, etc. If there is any way possible that you could make the meeting in Chicago it would be well worth the travel costs. ALL of the top doctors in the country will be attending and answering patients questions. The meeting is scheduled for Halloween weekend. You would be able to meet many other familial patients there too.
Paula
I had forgotten the name of the drug used in the clinical trial- diflunisal had been found to stabilize the trr protein so it does not form amylod. ttr protein consists of 4 tetramers bonded together- a mutation at different sites causes instability so the tetramers separate and rebond- forming insoluble amyloid. Neurontin and lyrica both work on nerve pain. My late daughter found that the neurontin did work to some extent. After her transplant- the pain decreased significantly.
Hi Ken,
I'm glad you are headed towards a more specific diagnosis, but sorry that you must join the ranks of us MUTANTS :) with FA/FAP.
The diflunisal has been helpful in some but not others, so I pray you are one of the lucky. Both my dad and uncle were part of the trials until their transplants. My dad is back on it, as a last ditch efffort because they don't know why he is getting worse. He was so severely damaged after many years of misdiagnosis they didn't even think the xplant would help, but it did stop the production of mutant TTR. But my Dad is getting weaker (subjectively and objectively with ENG and other tests) and it looks like the wild-type TTR (natural occurring) may be binding to the sites of the mutant fibroids. No one knows. Dr Skinner at Boston says they are learning a lot about "late-stage" FA from my dad (meaning they don't know enough to advise him). So I think the theory is that they're hoping the difusinal will keep the Wild-type TTR from depositing.
There is a new promising med out there, but can't remember the name. I think FoldRX is making it. The clinical trials are over and it's due on the market next yr. But your doc may be able to get it sent to you under "compassionate care" terms. I read that it was for pre and post transplant folks, and staved off deposits of both mutant and wild-type TTR, it apparently isn't that comprehensive. My dad was turned down (he doesn't remember the explanation) from the Fold Rx director based on the meds not made for someone like him. My uncle is in the process of applying. I'm hoping it will be out soon for myself, my aunt, my cousin, and any other of our family yet to be dx'd with FAP.
Neurontin is used for many things, including seizures and nueropathic pain. You usually have to titrate up to the right dose, which varies person-to-person (could be 900mg, 1200, 1500, 1800, etc). Some don't get enough relief to offset side-effects, but make sure you give it a chance. Don't give up before titrating up to higher doses. You may feel no relief from x dose but significant relief from the next dose up.
How has your mood been? This can be hard to cope with, even with effective treatments. I hope you have supports near you and seek professional help when or if you need it. In addition to the fear and worry about your future and functioning, chronic pain seriously impacts your life.
While I have not yet had symptoms of my FAP, I have chronic pain from a spinal cord injury and many damaged vertebrae and nerves in my neck (car accidents). Your brain reads chronic pain like chronic stress and often effects the neurepinephrine and serotonin, leading to depression. Like the situation isn't depressing enough! But there are treatments to help manage the pain and depressed mood--along with meds--such as therapy, guided imagery, relaxation techniques, etc.
Some also get relief from the pain AND depression with Cymbalta. Although it is most helpful for diabetic neuropathy, FAP pain is kind of similar. You have to go over the standard dose for depression (30-90 mg) for help with pain (like 90-120mg). I found it helpful for my pain (which isn't the same as the FAP pain) and it really helped with my depression. My dad also got some relief from it, but since he has a lot of autonomic involvement with his FAP, like erratic blood pressure, the Cymbalta was making the low blood pressure worse (they think) and had to lower his dosage back to 30mg. Cymbalta is also known to cause weight gain, so if wt loss is one of your FA symptoms, it may help. Neurontin can cause wt gain, but not as much as some other meds in that same family (like Depakote).
My prayer are with you. Let us know with type of FAP you have, and good luck with the meds. Hopefully this new med will help as well.
Your friend and fellow mutant,
Kristin
FAP ValMET 30, asymptmmatic so far
Dad-- FAP, end stages, post xplant
Uncle--FAP, early stages, post xplant
Aunt, asymptommatic so far
Counsin, asymptommatic so far
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