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Re: Diagnostic Help? [Re: vosadrian] #282526 02/01/19 12:55 AM
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Some important info you need to stress. You wake up stiff? For how long??? Exercise helps. Both ankles (my issue for years too). I beg you while there to get a script for PT for your ankles. Doing the wrong exercise can cause more damage and special shoes really help.

I beg of you to focus on diagnosis and treatment and try diet once you have a treatment plan. A doctor who will treat you aggressively is very important. That is the protocal now. A lot of damage happens the first 10 years. I can never stand long on my ankles, nor even hike because of the damage before treatment. I tried all the diets and none of them help. Please, early agressive treatment is important. Try diet once you are better.

Though I have the gene, my other blood work is all normal (for imflammation) hopefully the doctor will realize that is fairly common with AS.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Diagnostic Help? [Re: vosadrian] #282527 02/01/19 02:40 AM
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vosadrian Offline OP
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Thanks again all,

I found Tacitus signature. Have just read his story. Wow, I am certainly a lucky one so far. Makes me a little concerned about the ibuprofen I am taking.

My ankles are my longest symptom of my pain. When it first happened, It was very low on the heal near where the top of the back of the shoe rubbed and I struggled to wear shoes. I also limped a lot. It was treated as achilles tendonitis so PT was stretching and heal drops. It was during this time that the other side started to hurt also... the only work it was doing was lifting me for my 60 or so heal drops a day. I had lots of imaging done and mostly they found no evidence of anything wrong there. Some said minor tendonosis. One common theme was subtalar synovitis, but injections in there made no difference to pain. Incidentally I recently see that subtalar synovitis can be a symptom of AS. Anyway, at one point I had cortisone injections into the TFL tendons, and this provided some relief. I can now wear shoes and walk without a limp. I still get constant pain and the pain has moved higher up the tendon... but I can do most activities without the pain becoming so bad I stop them. My pain seems to differ from tendonitis in that it is constant and does not resolve with rest... feels better with movement. It feels worse from doing heel drops. No PT has ever helped it. I am interested in what damage can happen to peripheral joints that becomes permanent and if there are ways to undo the damage either surgically or conservatively.

I am hoping for some help from the Rheumatologist when I see him. We will see. This thread has informed me so I can go well prepared into the appointment. I know here in Australia that they require some pretty strict conditions to be met to use Biologics within the health system... and that mostly means only more advanced disease gets access. Seems counter intuitive, but I guess the drugs are expensive. I will push for the most aggressive treatment I can get.

Re: Diagnostic Help? [Re: vosadrian] #282659 02/19/19 04:16 AM
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HI All,

Just an update. I saw the Rheumatologist who I had seen before. He was good and seemed to think that the progression I have had probably indicated something of the SpA variety was effecting me, but he could not find much in the way of radio-logical evidence in recent imaging I brought along for hips/spine (which included SI joints). He said he had dealt with a number of patients like me who despite a lack of imaging/bloods evidence had been treated as SpA and achieved good response to treatment, and he was willing to try that with me. Unfortunately some of the treatments (biologics) in Australia require evidence I can't provide for government subsidy, so it may involve some $$ from me for a short trial period. But we have NSAIDs and DMARDs to try first, so hopefully they help. Of course if biologics are the only thing tp work well, I will need to find a way to manage that long term..... buy a lotto ticket???

I want to couple this with some diet changes. I have been on a low inflammation diet for a couple of months, but have not tried starch free, so may try that. But would I get a answer to the diet question with fasting and then reintroduction of various foods to see what triggers it. It seems to me that NSD would take a long time to know for sure if it did not help. Can I find out in a much shorter time with fasting. Then if I do that, what timing is best in relation to medications that are being trialled?

On the subject of diet. I see many different diets mentioned to help different people. If you were to choose one type that benefited the most people with SpA, would it be NSD?

Cheers!

Re: Diagnostic Help? [Re: vosadrian] #283267 06/17/19 07:11 AM
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Hi All,

Just a quick update. Over the last few months I have trialled NSAIDs for 3 weeks and MTX for 3 months. The NSAIDs were not helpful as expected as I have tried that before. There have been some changes during the MTX period but nothing really ground breaking. Some of my pains have seemed a little better (like maybe 20%), but I have also developed some new symptoms (my thumb and my TMJ and higher up back into neck/shoulders). I can't really say if the MTX did anything or not. It is possible the changes would have happened without the MTX. I have been doing Physio for many of my aching joints which may have also helped.

About a week ago I was able to try a biologic. I was given a month supply of Brenzys (Biosimilar of Enbrel). This is on a sample basis. My Dr says if it works for me it should do so within the month. If it works I will have to find a way to fund it, as I will not meet the requirements to get this subsidised. So far after 6 days I have not noticed any difference yet. I was hoping I would be one of those miracles that woke up the next day feel great, but that was not the case. Next injection tomorrow. I guess I have to be patient as he would not have given me a month worth if he expected to get a difference in a week.

So my question is just regarding the 1 month sample time. Is that enough time to come to a conclusion on whether that treatment will work for me? I googled and saw different people respond differently... some very quickly and some take months. I could not see what a typical (average) response time was. Hopefully a month is enough for that?

Oh and I am continuing the MTX during this trial of the biologic.

If this fails I will have hit the end of the road with the Rheumatologist, so diet experiments would be my next step. At this point I just want to find out if whatever I have is in the AS spectrum so I can then focus on the best way to treat it for me if it is. I would prefer to control with diet over drugs.... but I am sick of trying things that don't work, so really hope to get a better idea of what is going on.

Cheers!

Re: Diagnostic Help? [Re: vosadrian] #283269 06/17/19 09:03 PM
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According to Amgen, most people (60%) feel less pain and stiffness after 12 weeks on Enbrel and 3 out of 5 adults feel less back pain and stiffness after 6 months on Enbrel. That's consistent with what I've read on this this forum over the years. A small number of people seem to get instant relief, as in overnight. More people seem to get some relief within a few weeks. Most who are going to get relief at all get relief within 3 months. Some people's relief seems to continue growing up to about 6 months, at which point it levels off. So, no, I don't think a one-month sample time is enough time to come to a conclusion on whether it will work for you. I think you need to give it at least 3 months to see if you get any relief at all and, assuming you get some relief within 3 months, at least 6 months to see what your maximum relief will be.

Re: Diagnostic Help? [Re: vosadrian] #283270 06/17/19 10:52 PM
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vosadrian Offline OP
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Thanks Winston,

My Dr is in a position where he thinks I should know within a month, but also he can provide samples for 1 month (at no cost to me), so that may impact his decision. I may have to try to convince him to perscribe me longer and I will have to find some $$ to self pay. Of course, I still hope to get results before the 1 month, but just thinking it through before the end of the month.

Cheers!

Re: Diagnostic Help? [Re: vosadrian] #283314 07/01/19 03:46 PM
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Hi! My case sounds similar to yours, so wanted to check in on how you've been doing on the biologic? Really hoping this will be the beginning of feeling better for you!


Diagnosed AS. HLAB27+. Naproxen, indomethacin, meloxicam, and ibuprofen failed. On Humira (first anti-TNF) since July 2019 with no result so far.
Re: Diagnostic Help? [Re: vosadrian] #283332 07/03/19 12:44 AM
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Hi Katherine,

So far no change for me. I just took my 4th injection (so around 3 weeks in). I see my Rheumie next week to decide whether to continue or not. I want to do 3 months to give it the best shot of helping me. Really I don't want to rule something out unless I have given it a reasonable chance to work. Once I have ruled it out I am unlikely to come back to it.

I have found the Brenzys (Enbrel) really easy to use and to have no unwanted side effects. Just praying for desired effect! I get no pain on injection or site reactions or anything. An hour later I can't even find the injection site. So if it made me feel better, other than the $$ it would be perfect!

Re: Diagnostic Help? [Re: vosadrian] #283436 07/30/19 04:20 AM
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Just an update from me.

I managed to convince the Dr to let me do another month on the Brenzys (Enbrel). I have one more injection to go so I am pretty much 7 weeks in. Unfortunately I have not noticed any benefit. When I started the 2nd month I also stopped the MTX which was about 4 months on that. Unfortunately neither of these medications seem to have helped me. It is good to be off the MTX, but I don;t think coming off it made anything worse, so it probably did nothing for me.

In my case, other than pain symptoms which I experience through much of my joints (but worst in lower back and more recently cervical spine/neck/shoulders), I have no other pathological evidence that I have AS or anything like it. My Dr has been embellishing my need to thoroughly investigate this by allowing me to try medications to see if they help. He does have a few patients who it did help even though there was no evidence like me. He is of the opinion that if one TNF does not work than there is no point trying another. I would like to try Humira as it seems to be one of the more successful options I see on forums such as this, but I can't see him allowing me to try it given his opinion that we have explored the TNF option with Brenzys. He suggests if we want to try something else, it would be Cosentyx which works in a different way to TNF, so that will likely be the next and probably last drug test.

His explanation for my pain symptoms in the absence of drug response is a pain sensitivity syndrome which is a bit hard to take. Basically he can't diagnose anything in the realm of rheumatology without more evidence. A response to medication would be enough. Without that, he does not know what it is and without any evidence of an issue, he can only put it down to a pain sensitivity thing. As an engineer working on evidence based solutions, I understand why he takes this stand, but it is difficult to equate what I feel with this. I should note that I am still very active and able to push through the pain to fairly high athletic performance. Much of my life I have excelled in pushing through pain to achieve success in cycle racing, so it is hard to believe I could be over sensitive to pain now whilst still managing to achieve similar cycling efforts.

Hopefully the Cosentyx helps.... or next step will be a 5-7 day fast.

Re: Diagnostic Help? [Re: vosadrian] #283681 10/23/19 05:24 AM
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Hi All,

Just an update from me. Maybe it can help someone.

As from my initial post, I have a variety of painful joints in my body with the worst being my lower back. More recently I also have some areas of inflammation that are not necessarily painful, but just don't feel right like my left TMJ which makes strange noise when I move my jaw and feels inflamed for the last few months. Also recently I have some funny things happening to my eyes, but that could be just age related deterioration as I just got reading glasses (which make reading better, but I am struggling with transition between glasses and no glasses causing headaches).

Anyway, I tried the following treatments:
* A month on Mobic with no benefit
* 4 months on MTX with no benefit but just did not feel great and had some effects on head/eyes
* 2 months on Brenzys (Enbrel) with no benefit (first month with MTX also)
* 1 month loading does of Cosentyx (weekly doses) with no effect

Since that time I also had a MRI of SI joints that came back clear. So I am done with the rheumatologist for the time being. He was very good in letting me try things and I had it in my head that I had this, but now I don't know. I either have it but am non-responsive to medication or I don;t have it. I may have some sort of pain sensitisation which is what he thinks, but I feel there is more to it than that.

I am currently pursuing a mechanical cause centred around known issues in my lumbar spine (multiple level facet arthritis with spondylolisthesis at L4/5). Currently seeing a physio (again) for this. Also trying some dietary stuff at the moment figuring it can;t be bad for me even if it is difficult to not eat anything I like.

I did have a major episode of back pain that was instant and caused by lifting a heavy box. I think that lends some evidence to a mechanical nature of my condition. I am not sure how that can cause all the other joints to be sore, but I believe issues in the spine can cause imbalances that can cause joint pain elsewhere.

I do want to try an upright MRI. I think in a supine normal MRI machine there is no load on my back and the spondylolisthesis may be worse than it looks.

Also, a question on diet. I see many people trying many different diets. Can I presume that NSD/LSD is the most successful for AS? Currently I am on something like LSD to see if that helps. Thinking about a fast or carnivore diet in an attempt to go no starch.

Cheers,

Adrian

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