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Six years now on AP. I am still slowly getting worse and am feeling so discouraged sometimes. No way I want to take methotrexate or any of the biologics but, I am starting to feel desperate.
Hi,
Please tell us more about your treatment. What exactly are you taking, and how much?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein100 mg mino (by Watson) – twice a day, typically M-W-F.
250 mg generic ceftin (by Lupin) – typically twice a day, M-T-W, once every month or so, without the mino that week.
Clindy IVs – (I’ve learned to do them myself w/ my husband) timing and amounts vary.
OTC pain/inflammation every day – sometimes ibuprofen, sometimes naproxen sodium, typically prescription strength.
Hydromorphone by prescription as needed – which is every day, sometimes a little, sometimes alot.Next month I will get new blood work done to see where I’m at now.
I know the cysts that a mammogram broke 7 years ago started all this and my breasts now look like a couple bags of peas as my body tries to encapsulate bad stuff. I think I now have a vaginal tumor that I will find out about next month, afraid of more I don’t know about. I very strongly feel that if I were to start taking methotrexate or any biologic it would be a quick death sentence – knowing once I get the possible tumor checked out they wouldn’t prescribe them anyway.
As always, the RA symptoms go up and down daily. Some days I feel OK – some days I can only lay around crying until I get enough hydromorphone in to put me to sleep. Can’t walk much anymore, hands are getting mangled. Every joint is involved – jaws are mangling which is moving my teeth; have to use a ‘donut’ to sleep on due to mangled tail bone area. Noticeably worse every month now.
Add Sjogrens at least 2 or 3 nights a week keeping me awake and making RA symptoms worse.
Recognizable depression is setting in.
Edit: 9/2013 RF was 175
Diamond,
I think it’s a mistake to think that bacteria only sets off autoimmune disease. Genetics, environmental toxins including prescription and OTC medications and supplements, as well as viruses can play a role in the development of autoimmune disease. Please read http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/?tool=pmcentrez for an overview of just a few of the known viral and bacterial culprits.
I think there are many causes that we can’t do much about.
Best wishes,
Barb
@DiamondTNT wrote:
Hydromorphone by prescription as needed – which is every day, sometimes a little, sometimes alot.
As always, the RA symptoms go up and down daily. Some days I feel OK – some days I can only lay around crying until I get enough hydromorphone in to put me to sleep.
Hi Diamond,
I am wondering when you got started on Hydromorphine as you describe above, “…which is every day, sometimes a little, sometimes a lot.” Forgive me if you know this already, but Hydromorphine is a synthetic morphine derivative in the opiate class of drugs. Did your prescribing doctor let you know that this class of drugs causes dependence, producing a sedative effect with euphoria and reducing anxiety, but can have serious withdrawal symptoms and cause neurotoxicity, including pain syndromes and depression as potentials? It also causes hormone imbalances. Have you had your hormones tested recently (thyroid, adrenals and ovarian?). It is very worth reading the following description of this drug in its entirety as you may recognize something you’re experiencing:
http://en.wikipedia.org/wiki/Hydromorphone
This really is a controlled drug for a reason and should only be used for short periods of time, as it can create dependence issues. Is there any chance you can get to a Pain Management specialist? Also, is there any way you can get your other health concerns checked out as a priority, because it may turn out that your breast cysts and suspected tumor may be nothing of concern and you could be on another drug quite safely to enable you to more easily withdraw from the hydromorphone.
My best fellow patient guess (and this is not medical advice, just something to consider when speaking with your doc) is that you might be dealing with extreme toxicity and your body has gone into a very hypersensitive state. Have you trialed stopping all your antibiotics for a period of time?
All in all, my best insights would be to see a Pain Management specialists asap (you will likely need an alternative pain med and help to withdraw from the Hydromorphone). Would also consider getting your concerns about cancer addressed also a top priority and to also discuss a good washout of all your antibiotics. Detoxing your body on a lot of levels might be the best thing you can do for yourself so you can return to a clean slate. Getting some baseline labs drawn also as a priority (not waiting till next month) to see what is happening would also be a good idea.
Sorry you’re going through such an awful time Diamond. Don’t be so hard on yourself, because you’ve obviously given it all your best try, but the time sounds to be well past due to get some professional help with these issues. Wishing you the very best.
Diamond,
Have you ever been treated with anti-parasite medications? My son’s LLMD, who is also a rheumatologist, tends to suspect that parasites are a big cause of arthritis.
My son’s story is in the personal progress section. One of his initial symptoms was a bad diarrhea, so that was a clue.
Also, have you been treated with anti-virals?
Have you ever consulted one of the LLMD, AP rheumatologists? Like Dr. F in California or Dr. Z in Virginia?
Also, if you consider anti-depressants, you might consider Wellbutrin which has known anti-TNF properties… which could help.
I’m so sorry you’ve been suffering so long.
Mary
Hi<
@DiamondTNT wrote:100 mg mino (by Watson) – twice a day, typically M-W-F.
250 mg generic ceftin (by Lupin) – typically twice a day, M-T-W, once every month or so, without the mino that week.
Clindy IVs – (I’ve learned to do them myself w/ my husband) timing and amounts vary.
OTC pain/inflammation every day – sometimes ibuprofen, sometimes naproxen sodium, typically prescription strength.
Hydromorphone by prescription as needed – which is every day, sometimes a little, sometimes alot.Has your treatment changed much since 2008?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI’ve had problems with ABX not helping me, as they have for others. Parasites were one layer but I believe the deeper layer is cavitations of the mouth for me. Do you have any metal in your mouth or root canals or wisdom teeth or others extracted?
These issues mentioned above can continually cause toxins and bacteria to breed in a area that has low if any blood flow due to necrotic bone and ABX don’t reach these areas well. I dunno if this is a issue for you or not but something you can explore as the oral cavity is a gateway to the body.
Best Jill
Dear Diamaond,
I was dxd with RA and tried antibiotics, and for me I could not handle the side effects or the pain of the antibiotics. I would take 25 mgs of mino and be in tears. The best thing for me was to change my diet. I went to Gerson.org and I read for those with severe RA it might take 3 years to get better. My crp went down from 6.80 to 1.18 and sed rate went from 65 to 19 and it is still going down, I am on year two so by next year it should be way down, becasue it has only gone down since I have implemented the diet change. I do not juice 16 times a day, but I started cutting out grains, sweets, dairy and excess meat. I can’t eat corn or potatoes either. but I can get away with a 90/10 diet and sneak n some of those foods that are off limits.
Our immune system can heal itself of so many things if we stop poisoning it with garbage and toxic meds. Also if someone takes immune supressing meds(Traditional RA meds) for the rest of their life then the immune system will never be able to heal . I know some people here get better with antibiotics , but I have often wondered if it was their immune system that healed them and they were not taking toxic-immune supressing meds so they had a fighting chance of getting better. This is all my opinion, but I have labs to support my case, because, they have gone down 50-100 points every six months since I started the Gerson Diet. I tweaked the diet a little like I mentioned before, I added some other foods, but the idea is the same. Our bodies need to heal and the more fresh fruit and vegetables we eat/juice the faster we can heal.
I had a frozen elbow for over a year and now it is fine, it would not straighten out once in that year , now its as if nothing ever happened to it. My doctor was amazed too. My swollen knees were swollen for three years and now no swelling, just a little crunchy sound from some damage, but they do not hurt at all!!! I am still healing but I have come so far it keeps me going, I have seen so much healing I know I will be running a 5k in the future, and I could barely make it down the stairs at my house a few years ago.
Sorry so long, I hope you get better, I will say a prayer for you. Take care.I agree that diet makes a tremendous difference. I had thought if I did diet AND AP that I’d have the best chance. However, some days I’m questioning that decision, because I’m worse now since starting AP than I ever was doing just the diet. My numbers were improving just doing a plant-based diet. I don’t know what my numbers are now, but I know they are worse, because I have a lot more swelling and pain.
I don’t think enough can be said about diet change. It truly does make a difference in your inflammation markers.
Valsmum can you share what a typical days diet looks like for you. I have made big changes in regards to dietas well. I am gluten, dairy,soy, grain and starch free but I am still having flares.
Ariel
Looking at the timing of the various meds you have introduced (taken from your signature), I’d say you are in the classic time-frame for a herx, during which your symptoms as well as your labs may worsen.Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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