Ok, status is this:

I'm still undiagnosed, my GP is still a fool, I am still plagued by stiffness and pain in the mornings and evenings, I have an upcoming Colonoscopy in 8 days to explore if my stomach issues can be due to inflammtion, and after that I am going back to the Phys spec doc that really felt like she took me seriously.

Now, unless the colonoscopy turns up some revelation, I am going to ask her if she is willing to prescribe some medicines to try and find some relief but also help in the diagnostic process.

Here is what I am thinking:

I still have sores in my nose that do not grow, wich look, feel and are infected more and less (it varies). That combined with my huge ear and jaw issues (clicking noises, jaw pain, cracking noises on closing and opening mouth etc) leads me to think I want to try Cortisone nasal spray. I know it's used for allergics to reduce inflammation, maybe it will help me? -I'll have her look at the nose and evaluate if I should try another antibiotic. I tried one, and as usual, my joint pains are a lot better when on one. Sadly the infection bounced right back, that makes me think an inflammation is the base of the problem. The fact antibiotics help me may ofc be due to the stomach problems being helped by them as well. Colonoscopy should give me some answer to that.

Now for the pain and stiffness, yeah, I know a lot of you would want me to try the NSD or LSD, but you have to remember that probably most of you already have been down the road of medicines tried, I havent even explored it yet. I kinda want to go that way first and keep the diets as a lifesaver in my sleeve for later. So, I tried Voltaren, wich triggered my stomach issues to go absolutely mad but also helped with joint pains and fatigue. What's this Methro-something you all talk about, could that be somehting I could ask to try? -Pro's and Con's? -Would it be helpful in diagnosing the problems as inflammatory in nature too?

Any other suggestions for a medicine that may help in diagnosing and/or relief are appreciated greatly!

I have considered asking her if a localised shot of steroids or other relief agent to my lower spine / IS-joints and top of my neck could be an option.

Plain painkillers, really is not something I will consider a lot yet. I feel I can handle a lot of pain, the resulting fatigue from prolonged periods of it is frankly worse. And if I want to try any meds with their sideeffecs, I want them to attack the problem rather than the symptoms I guess.

I'd appreciate lots of viewpoints on this, thanks in advance!

Love
gilth

Hi Gilth, I think you may be talking about Methotrexate? You mention wanting to get on a medication that treats your disease and not just your symptoms, that would be what is called a DMARD(Disease-Modifying Antirheumatic Drug) and Methotrexate(MTX) is in fact a DMARD. One thing, although I'm on MTX, I'm not sure what the prescribing criteria is(not sure whether a concrete Dx is neccessary to prescribe)...another thing, I noticed that you have GI issues, Methotrexate tends to cause an increase of stomach acid production, so this may be a problem for you...As to the blisters/ulcerations in the mucous membranes (nose, mouth, eyes, etc)...this is often seen in us autoimmune/auto-inflammatory diseases, it can have many causes (Sjogrens, Lupus, or another of connective tissue diseases, inflammation, chronic low-grade fever, etc.), this is a constant problem for me and I can tell you that MTX will make that MUCH worse, it burns my tongue, lips, throat, etc., sets the whole mouth and throat on fire!! ...it's just miserable, the Folic Acid helps tame that while on MTX but wow, miss a dose of the Folic and it's in full force again the next day... ... at any rate, Gilth, I wish you well in finding what works best for you...

Michelle

If you want something that will help speed up the diagnostic process, then a short course of oral steroids could be useful. If you get good relief, then it indicates that it is likely to be an inflammatory process.

The nose ulcers are likely to be just general autoimmune problems - they are really common in many autoimmune disorders. I'm not sure that just cortisone nasal spray would be that useful because it wouldn't address the cause.

Antibiotic therapy isn't just about prescribing an antibiotic course. There are some protocols for it, and I doubt if GPs would want to prescribe them longterm as there are definite disadvantages - including the possibility of increasingly resistant bugs.

NSAIDs are the first line treatment really. As far as I remember you have really only tried one, diclofenac. There are many different sorts. You could try asking to try a different one, with the addition of a stomach protecting drug. Or you could try diclofenac gel instead.

Methotrexate does have side effect problems, as Michelle has said. It also is more for peripheral problems than axial ones.

8 days isn't long to wait for colonoscopy, and it might be that it shows enough to get you some good treatment (that would also have a positive effect on the joints). I think holding out till the results come through from that might be better than jumping in and trying to get a GP who doesn't actually want to treat you right now to agree to treatment. That phys. med specialist might be a much better bet to talk alternatives with.

If you want to hold off diet, thats OK, but had you considered doing low starch right now, and keeping in reserve a strict NSD? I can understand wanting to have medical treatment first (I'm in a similar position to you), but if you aren't getting it, then it does make sense to do all the self help stuff like diet. I have used my response to low starch in talking to doctors, by saying that I get considerable relief when I do everything I can to treat myself "as if" it is AS by using NSAIDS, doing regular stretches and low impact exercise as well as heat and ice, and low starch diet. Put at the end of a list like that has reasonable impact without them having to buy into the theory of NSD.

I'm not sure if you have ever said, but do you get the option to change GP's? If so, then it might be a good idea to start looking and having "trial" appointments with new ones - tell them quite clearly the first time you see them that you are looking specifically for a GP who will take your long history of physical problems seriously and try and find some answers, and you want to know how they will approach the problem - almost like interviewing them for a job.

Hi, gilth:

Look, You are having the "procedure" that requires a complete clean-out. Why not, after this day of no food, see how many days You can do? Two more, three more. See how much better You will fell! Maybe keep Your diet low-residue when You break the fast, too--could help in diagnosis...

But I am against the use of steroids except in very extreme cases. Injected locally they can be of some benefit but that is a temporary measure that can lead to more trouble (bone density/necrosis issues). You are right, methotrexate stomps on the immune system, but not as effectively.

The tnf-a inhibitors can be very helpful in some cases, and perhaps along with the methotrexate they will have a longer effective life. This is the best option I can think of, aside from dietary measures.

Which antibiotic seemed to help? Just curious. Antibiotics alone will not be a long-term solution as some of these can lead to the development of resistive colonies.

Good Luck, whatever You decide,
John

Hey Michelle!

Aye, it was Methotrexate I was thinking about. I tried an NSAID called Voltaren, but it lead to acid reflux, heartburn, stomach acid, constipation/diarrhea in combination and gas. It was just to much for me. Even though it helped with joint pains and fatigue.

Is there any difference between DMARD and NSAID?

When it comes to prescribing criteria, it doesnt apply the same way here as it does in the US and some other countries. I can probably get it with no diagnosis if I can convince the Phys Med Doctor we should try. Getting it with no doctor prescription is of course impossible. The only medicines that have diagnostic criteria really, are the REALLY expensive ones, like biologics.

And yes, I do have perodical GI issues, hence the upcoming Colonoscopy (boy, I am not looking forward to that one), and given the bad response to Voltaren maybe it would be the same with MTX, but Id really have to try to find out I guess.

I have considered Sjogrens, I have a lot of issues with dryness in mouth, nose, ears. At its worst, and usually in the winter, the inside of said organs really feel inflamed. The problem is that I use an anti-depressant that can give dryness, and my GP ofc is a moron, and thinks that too is anxiety...

Of course if I did have Crohns, that would explain the nose and mouth sores and ulcers as well as inflammation there too. It's almost so one could hope for a diagnosis, but I'm beyond hoping for any great revelations anymore. I'm just one of those people where it doesnt pop right out at you from a blood test, or the usual examinations.

Thanks for the help, and I know you have your own great issues, so it makes me admire you so much that you even take time out to help someone like me, another link in the chain that is my faith in humanity has been welded. Thanks and ((hug)) and best wishes and thoughts, Michelle!

Love
gilth

Hi again gilth...yes there is a difference between DMARDs and NSAIDs...DMARDs treat the disease and NSAIDs treat the symptoms...the MTX is harsh stuff, if I hadn't already been on biologics & DMARDs, when I learned about the no-starch-diet, here at KA, I would've jumped on it!! But I've been on & off biologics for a very long time, 17 years(I participated in the Enbrel clinical trials in the 90s), so I practiced the low-starch-diet, everytime I quit the biologics and DMARDs, I develop heavy MS symptoms and I get back on them after a couple of weeks, so I never was in a position to fully commit...but I had to get off of both in order to have surgery, 4 weeks and at least 4 weeks after...it's been two and half half weeks now that I've been off of them and I'm going for it(as soon as I can eat again... ) I hope you find a regimen that works for you, big hugs, my friend...

Michelle

Hey cemc!

Oral Steroids....hmm. I was told if I had a positive effect form NSAIDS, it would be a strong indicator. Voltaren DID help, but sideeffects were too harsh on that one for me. Would steroids be another good indicator then?

Maybe you are right about the cortisone....and I totally agree the nose ulcers would be linked to the rest of my auto-immune issues. (That they ARE auto-immune in nature, and that they are NOT linked to anxitey, is about the only 2 things I know absolutely, with no doubts, certain)
I actually even got a large abcess (grape size++) in my armpit that my GP had to cut out 6 months back. I am willing to bet that is part of the picture too.

Yeah I know about the antibiotics and their hazards. When I say they have helped my pains, it's from a long perspective experience from shorter courses for other issues. Thus i've had benefit from several, but the last one, wich came at a perfect time, as my joint pains were severe at the time almosty kicked me right out of my flare.

Yeah, I really do want to try another NSAID, or several. I called the rheumy and explained the problems (and benefits) of Voltaren, and asked for another one. He said as he could not determine a rheumatic diagnosis, he wanted my GP to prescribe one. My GP: "oh they didnt work, well it's still just anxiety you know". No new prescription. Wich is why I'll bring it up with the wonderful lady thats a phys med doctor and actually believed everything I said, once I see her after the Colonoscopy is done.

Wasnt plannning on the GP at all, and not before the Coloonscopy, either. He is as I said useless. I guess I have to explain a little here: Why don't I change GP?

Well...in this country everyone is by law entitled to, and "assigned" a GP. (and expenses are covered). It is however regulated to a degree where you can change GP a few times. I switched the first one I got assigned as he was far out of town, and never actually saw him. Lucky I did, he was arrested half a year later and put in jail for 5 years for selling prescriptions in a large scale.

Then I got another one in town as replacement. I didnt need a doctor a lot back then, but whenever I did have to go, I got a new resident doctor as his temporary replacement each time, as he is one of those docs that is ALWAYS "6 months study tour to Africa", "Reeducation", "teaching classes at med school" etc. There was no chance to build a relationship and trust to him, as he was simply never there.

So I switched and got my current one. Wich when I got real problems with pain 2 years ago, was great when he thought it was anxiety (since thats diagnosis is stuck with me), and I didnt know a lot better. But as I grew and learned that this has nothing to do with an anxiety diagnosis, he got irritated I could believe something as stupid and after that he has been an [*bleep*].

Wich leaves me with a few more available switches, and I do fear that with my anxiety diagnosis, the next one may just as well be just as thick about it as this one.

So I'm more or less "why bother, I'll stick with this one and at least get a mad laugh the day I get a sure diagnosis and he is proven wrong, wrong and wrong."

Agree on the diet part, but it's still early days for me considering AS. I will try it, but it's not time yet

I do however actively use heat (and recently started trying ice with success) and exercise and stretches. I wouldnt get through the week otherwise some weeks.

Love
gilth

Hey John!

Mhm, I hear what you say, maybe I'll try.

Ahh, the antibiotic that I used last was the one with greatest felt effect, and is should be mentioned this was in the middle of a heavy flare: Doksycyklin HEXAL 100MG

Could anything else injected locally be of help diagnostically and for the pains themself, with less damage potential?

Love
gilth

Hi Gilth,

I have had A/S since I was 23, now 50. Did you have the blood test done for the gen HLAB27 ? You need to get a dx, before you start trying these very potential harmful medications. I tried the diet, and did nothing for me, I actually had the stomach flu for 4 days this winter, and only drank water, and my A/S was terrible. BUT many people do get relief, so I would try that before the medications.I can't imagine any doctor putting you on methotraxate with out a Dx of an arthritis of some kind. The colonscopy will tell them if you have an inflammatory bowel diease, which could be possible with A/S but not necessary. I don't have inflammatory bowel disease but have diarrhea daily, from depression and anxiety, caused from the years of pain of A/S. It amazes me how pain destroys your coping skills. I would still not be DX, if my G>P was looking after me. I was a nurse and saw an orthopedic doctor, who immediately sent me to a rheumatologist. It was obvious to me what I had with swollen toes and swollen joints and terrible SI pain, and then of course the iritis came after. You really need a Dx.


Good Luck,
Janet

Hello.....I'm new here but it looks like I found the right place. I have had AS for 40+ yrs and I've tried lots of different meds,execises and diets.My Father had AS and my older brother has it as well. My brother went on Humira every two weeks and after 2 and a half years he is in remission. I think age is a big factor...my Father stopped having symptoms and pain when he was in his mid 60's and my brother is now 62. I take Humira once a week and Voltaren XR 1x daily. I also have acute Uveitis. No question Humira has helped me immensely,but I still have flares and sometimes they are pretty bad,but I'm a lot better than before. Has anyone tried Golimumab? I hope to discuss this with my Dr tomorrow. My best to all of you......Sam