Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group taken off biologic, help

Hi everyone- sorry I have not been posting in awhile. I was taken off my biologic Simponi due to damaging nerves in my body, including my autonomic nervous system. I am still going through testing and waiting on test results. I have tachycardia now but it is being controlled with Corlanor. I am on leflunomide, sulfasalazine and low dose Prednisone. I just recently had to beg my rheumy for a steroid dose pack to get relief in my wrists, hands and feet and I asked about going on a different biologic and he said no. I feel like without a biologic, I am in too much pain and thinking about a powered wheelchair because when I walk, it flares my feet even more. The doctors added gabapentin and I am taking Tramadol and recently started a pain cream with ketoprofen and gabapentin. It helps a little but not like the high dose steroids. The docs won't give me anything stronger than Tramadol. I can't do NSAIDs due to stomach damage and I have already tried methotrexate and LDN. Doc said during my last visit that if Taltz gets approved for AS, I can try that but I did read that it wasn't benefiting patients with AS so what am I supposed to do now? I have also asked about antibiotics to treat the AS and was told no and I am on gluten free diet and eat low starch and trying to get out the sugar.

Shari

Hello, Shari:

I'm sorry You have lost the biologic! Never heard of the problems they believe it is causing You, so have no research in this area.



I would not accept "no" as an answer because I allowed the medical guilds to treat me for the first 30 years and got only failure, so I cannot any longer allow a doctor stand between me and my health. I order antibiotics at my own will and pace and when I am in Philippines (or visit Mexico for the purpose), I can buy my own antibiotic agents.

But perhaps You asked the WRONG doctor--The Road Back Foundation has listings of local physicians who are familiar with the use of antibiotics in treating autoimmune diseases; please write to them for a local reference.

Main thing of course is diet, and I hope the combination of the proper drugs with diet can provide total relief for You, as they have for me.

HEALTH,
John

Hi John - I will contact The Roadback and get some recommendations. My primary told me he prescribes antibiotics for RA but not AS and that he knows about roadback. He also said he would let me try experimental LDA shots and then he changed his mind.

I am glad that you found what works for you and I appreciate your help.

Shari

Hello John:

How do you choose the antibiotics you want?

I strongly feel that my symptoms were triggered and are maintained by multiple infections. My levels of CRP and rheumatoid anti-bodies are zero even when indulging on starch as I did in an experiment in my last blood tests. But I did elevate my ESR to a medium-high "normal" at that time. I really think that the markers that rheumatologists have interest in are not the ones I should be concerned about. Anyway...

By telling my story to all kinds of specialists (ENT, GI, opthalmologist, rheumatologist, allergist, orthopedic surgeon, neurologist,...) I always try to lead them to conclude that it is an infection but they do not acknowledge the possibility. On one occasion with a orthopedic surgeon I saw with regard to pain and inflammation at the base of my scull I asked him if a fungus infection was a possibility. He said it's unlikely and didn't ask me why I suggested that. I should have approached the idea differently. In another occasion (two years later) I presented private lab results of infection to a GI doctor and the doctor said, "the infections are probably gone by now." A very unscientific conclusion! Another GI doctor simply said "we don't treat people for those." The beliefs and attitudes of doctors annoy me, but that is another topic.

I live in China and can buy antibiotics from behind the counter but I am reluctant to "shoot in the dark." It seems really stupid to take an antibiotic that will not target the right entities but likely create some new super-bugs and just make a situation worse. For example, if I have a fungal problem and use antibiotics that targets bacteria than I am worse off. If it is a micoplasma then the antibiotics need to be very specific. I was exposed possibly to more than 20,000 different species of single-celled organisms in a minor scuba incident four years ago. Testing and identification needs to be done first.

I consulted with a naturopath that ordered a comprehensive stool test from Genova Diagnostics in NC, USA and a few parasitic microbes were identified. I am sure I still have them based on symptoms.

Since I have not found a clinic that will test for what I want (fungi) or be thorough about it I have resorted to using natural anti-biotics such as:

cloves (high doses are toxic to the liver),
cinamon
pumpking seeds
garlic
ginger root
onions

Others I have learned about but have not aquired are:
Berberine (doesn't kill good bact)
Slippery Elm
Golden Seal (from Canada)
Gum mastik (from africa)
Thyme (very powerful)
Rosemary
quesia
grated beet root
grated raw carrot
chives
scallions
(and more)

I did get into remission two years ago and at that time I was very religious about being on a no starch diet, ran 4.7 km a few times a week in the morning and was using a product called CanXida Remove along side many nutritional supplements.

I feel that I might not be taking natural anti-biotics at high enough doses or following a proper protocol of rotation for them to be effective. I should consult a good naturopath or TCM doctor.

I do find that a high quality probiotic with at least 30 billion CFU's a day is of great help.

Again, my only question to you John is "how do you select antibiotics and know what dose to take, for how long, etc?"

Thanks!

KG

Winter so sorry to hear all of this.

You sound where I was before humira (and methylpred for flares).

Before humira or even methylpred, I used lots of ice, lots of ultrasound, lots of PT (or chiro), lots of "not overusing" body parts (which meant just barely using some body parts).

Was never given anything beyond tramadol either and that did almost nothing, kinda like tylenol at taking the edge off, but that was about it...in hindsight probably for the best to not be on an opioid as the methylpred (for flares) was so much more effective.

I do still do Aleve now and then, but only for a few days 1 or 2 times a day for my very very worst days.

I'd find another doctor who might do more to help you.

Not just another rheumy...orthopedic doctors, physiatrists, interventionalists, podiatrists, hand surgeons, PTs, and chiros have all helped me in various ways in managing my symptoms, while I worked at getting a rheumy who would dx and treat with the right meds...for me that has been methylpred first and humira now.

But too, I never had serious side effects from a biologic, so that could change things.

I would do some research, see if just because simponi caused those symptoms, would another biologic do the same??? what are there mechanisms of action??? take that research to the doctor???

Do the wheel chair, do whatever you can to manage the symptoms, its a mutlipronged approach.

even on humira, I've gotten steroid shots into my C2-C3, C3-C4 facet joints, do ice and ultrasound on my SI when it flares, wear only totally flat shoes as its the only thing my feet can tolerate, don't overuse my hands, sleep in my recliner (because of my neck), etc.

but yeh, without the humira, I was so close to disability, that I don't want to go back there, so I understand.

sending hugs!

as for diet, for me its not the starch / gluten, for me its the casein in the dairy...getting rid of cow's milk and switching to coconut milk when I need "milk" (yogurt, ice cream, etc) has really helped my gastritis, and maybe other inflammation.

Maybe try a gluten free, casein free diet???

Maybe get IgA, IgG food testing done (through a naturopath)...that's how I discovered that I'm sensitive to dairy and mildly to eggs....

then my doctor did IgA/IgG testing of S cerevisiae (bakers yeast) and that too came back positive which indicates crohns, so I try to be as yeast free as possible...already wasn't eating much bread due to diabetes, so that wasn't too hard to stay away from bakers yeast.

The diet does help (casein free, yeast free), but not enough so I still need humira.

also can do other things (supplements) to heal the gut.

maybe that just takes a long time to heal...diet changes can be first step.

probiotics, probiotic foods, prebiotic foods, other supplements can be a second step.

but hopefully you can be put back on a biologic...i too have experience with them being the game changer.

Hi Sue- thank you for all the good advice. I saw my doctor yesterday and he is putting me on another steroid dose pack and told me he will need the weekend to think of which biologic to try next. I have tried Enbrel, Humira, Remicade and Simponi and I almost died from Remicade. Enbrel caused hives and infection for many years. I always seem to have an issue on biologics. Was only on Humira for 3 months and I don't remember why doc took me off. The doctors are not sure if the Simponi damaged my nerves or if the issue is autoimmune. I damaged my autonomic nervous system so I am in tachycardia now and I am losing bladder control. I am on a strict gluten free diet and I do eat very healthy but I could still make improvements and look into the food allergy testing you suggested. It sounds like we are in a similar boat with our diseases being disabling without a biologic. My healthy friends think I am nuts to try another biologic so it is nice to have people like yourself who understand why we put these drugs into our body.

I will keep you posted.

Shari

There is the newer one, Cosentyx. I'm starting it this weekend. Like you, I've been through Remicade, Enbrel, Simponi, Humira and Cimzia. (I see you haven't been on Cimzia--that one has been the best of the ones I could take. Humira was the best, but drove down my WBC, particularly neutrophils, so I had to stop it.) I had to stop the Cimzia after having pneumonia in summer of '16 that degenerated into a long series of scans to see if a lung nodule was something serious (it's not). Just when I could have started something else, I broke my foot in several places and it wouldn't heal quickly. Finally, I can get onto treating my PsA again after more than a year of almost nothing (just MTX). In that time, I've lost so much stamina and pain levels have soared at work since I'm on my feet a lot. I'm sorry you are having to delay treatment and suffering so much as a result, not to mention the new nerve stuff.

But whatever you go to, definitely get another opinion from a specialist who can look at the new symptoms and hopefully figure out what is happening. Neurologist or maybe an immunologist, if you're near a large city or medical school. Do some internet sleuthing to see if there are others who have had similar issues with Simponi. (I didn't, but for me, it didn't last through a whole month and I abandoned it after 9 months.)

Good luck with your quest to find out what's going on. Gentle hugs.

Hi Rumble- Did you do your first shot of Cosentyx yet? I hope the Cosentyx will be the drug that works and is well tolerated for you. I said a prayer for you. How did you break your foot? I was an OT for many years and I remember learning foot fractures take longer to heal. Is it all healed now? Have you tried leflunomide yet? Leflunomide can help PsA. I was on methotrexate too in the past. It helped me somewhat but I had a lot of diarrhea, migraines and nausea on it and got down to 92 pounds. I seem to be tolerating leflunomide better than methotrexate.

I was sent to a major hospital to evaluate the nerve issue and so far I got a borderline POTs diagnosis and still waiting on other results but I think it will end up being small fiber neuropathy with autonomic dysfunction.The docs think it could have been triggered by Simponi and they said it is also autoimmune. I am taking Tylenol with codeine 300, oral gabapentin and gabapentin, ketamine and ketoprofen cream. The steroid packs are helping the pain more than the oral Prednisone. I have the worst brain fog but I think that is from all the inflammation going on right now. I am supposed to hear back from Rheumy next week as to what biologic I can try next. I have some anxiety about starting a new biologic because of prior bad reactions but living like I am now is not a good quality of life'so I have to keep trying.

Shari

Hi everyone - doc decided to try me on Cosentyx. Will keep everyone posted.

Shari

Shari, I am sorry to hear this. I tried to do a bit of research on it, but I am either rusty, or wasn't using the proper keywords (probably because I am rusty). I don't have any advice, but wanted to let you know I'm pulling for you.

Warm hugs,
Kat