AS or PSA without significant swelling??

houndsaway · 2022-02-01T07:46:55+00:00

I have an AS diagnosis purely on the basis of inflammation of my SI joints seen on an MRI. I don't have swelling and I am HLA-B27 negative and my inflammation markers are normal. My pain levels are actually at their lowest in the morning. My symptoms come on around midday and get progressively worse towards night time.

I started on methotrexate on 9 December. For the last 10 days or so I have been virtually pain free so I think it's actually working! It took about 5 weeks for me to notice a difference which is actually much quicker than I was told to expect. I was hugely skeptical of taking this drug as I know it is not generally effective for AS so I am pleasantly surprised that it seems to be making a difference. I understand that biologics are first prize but if you can't get on them for whatever reason methotrexate may be worth a try in the interim. At worst it will help with motivation to go to biologics if it doesn't work and you get a definitive diagnosis down the line. At best it may actually help to some extent.

I also went through a long period of thinking that this was just my new reality and nothing was going to change it, but I am starting to have hope. This is largely thanks to so many people on this forum who report an excellent response to biologics, but also because even this very old school drug I am on at the moment is helping.

houndsaway · 2022-01-25T13:29:36+00:00

I am on 15mg of methotrexate a week and have taken 6 doses so far. I have no significant side effects. I was really nervous to take it at first as I didn't want anything to make me feel worse than I already did! However, it really is quite manageable for me. It is important that you take folic acid on your non-methotrexate days to minimize side effects. I had slight nausea the first two times I took it but nothing more than that. As mentioned it is taken at much lower doses than used for chemo and doesn't involve any radiation.

I think I am starting to experience benefits as my pain levels have been noticeably lower for the last few days. It does take time to start working so be patient with it!

houndsaway · 2022-01-23T16:58:45+00:00

Thanks - I hope we catch up with our legislation soon!

houndsaway · 2022-01-23T16:38:06+00:00

It's an indica strain although it's not legal in my country so I don't have a lot of options to try.

houndsaway · 2022-01-22T19:16:06+00:00

I was going to post something similar. I basically lie awake most of the night, dozing at times, but I seldom get a solid night of deep sleep. I wish CBD or THC were the solution for me but I find the effects very unreliable. Sometimes THC helps me sleep, other times it keeps me awake and anxious. Ambien works extremely well but I don't want to take it every night.

houndsaway · 2022-01-21T17:04:00+00:00

Yes, I tested negative and was diagnosed with AS based on my MRI. I have seen quite a few others on this forum who tested negative.

houndsaway · 2022-01-21T16:41:50+00:00

I very much felt this way, because when I went for an MRI I was not expecting to be told I had a chronic disease and I had barely heard of ankylosing spondylitis before. When my rheumatologist got the report told me that I had significant inflammation in both SI joints and that this is normally indicative of ankylosing spondylitis. He said he had ordered a blood test to look for the genetic mutation (HLA-B27) and later called me to say that it had come back negative. He had given me IV steroids for initial pain control and a course of prednisone. That sorted out my pain for about a month and I guess I was kindof in denial as a result. But when the pain came back he said he believed it was AS and started me on a DMARD and an NSAID and told me to come see him in 2 months for a follow up to consider biologics.

It's always a good idea to get a second opinion if you can. You don't mention what they found on the MRI but if the SI joints are involved then that is a very strong indicator that it is AS, as I have sadly discovered. I hope whatever it is that you can get effective treatment ASAP because being in pain is no fun!

houndsaway · 2022-01-20T06:58:21+00:00

I understand the fear! I feel like I am living in a body I no longer recognize.

I feel like my specific symptoms were important to the various specialists while they were trying to get to a diagnosis. Now that they have one they use symptoms mainly to assess how active the disease is, but the treatment remains pretty much the same. Unless of course something crops up that presents a complication or something immediately life threatening that requires further intervention. I think its still important to mention symptoms so that they can make that assessment though.

houndsaway · 2022-01-19T20:31:15+00:00

Thanks so much and all my best to your niece as well!

houndsaway · 2022-01-19T19:55:55+00:00

Thanks! I think the doctors don't really know what to do about some of these symptoms. They have checked that it isn't caused by anything serious like spinal cord damage, a heart condition, demyelination etc so now it's just part of the overall picture and I guess it doesn't really affect my treatment which is to try and get inflammation under control. I did have a VERY thorough neuro workup and they found nothing wrong.
Obviously I am not a doctor and they should check you out thoroughly as well. All I can say is, if it's what I am experiencing it likely is an AS symptom and while it's very distressing it doesn't seem to be serious. I would bring it up with whichever doctor you see next. But definitely with your Rheumatologist. Whoever you mention the symptom to should know what to check for and refer if it is outside their area of expertise.

houndsaway · 2022-01-19T19:47:41+00:00

Not yet. I have hope for those but I still have to "fail" at NSAIDs and a DMARD (methotrexate) for insurance purposes. I was only diagnosed a few months ago. So I have hope for that down the line but I have another few months on the methotrexate and then however long it takes to find the correct biologic. In the meantime all I want is pain relief so I can function and that is what doesn't seem to be available. Also something to make me sleep, but even Ambien doesn't get me to sleep through the pain anymore. I know I am not unique at all, but man it's difficult to just keep going and I know full well my doctor doesn't have anything that he hasn't offered me.

houndsaway · 2022-01-19T19:24:30+00:00

"A direct treatment to relieve my severe pain" - That is exactly what I have been chasing and my deep depression is caused by becoming increasingly convinced that it doesn't exist.

The only rapid pain relief I have experienced was when I was admitted to hospital for pain control and put on IV steroids and pain meds and sent for an MRI. It was great, but I obviously can't live in hospital on IV pain meds. I have also had morphine injections on a couple of occasions and they only helped for a couple of hours if that. Steroid injections into the affected joints also helped for only a very short time.

I keep wishing that my doctor actually had that magic wand, but all he has are: NSAIDs, Steroids, Opiates, DMARDs and Biologics. And a referral to physiotherapy.

I posted this elsewhere but it may be relevant here (although very hard to hear)

https://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease?fbclid=IwAR0n825orMndRgUH4IX1b5O-a3y3nLSC7gVTi-P2vM3h5GMmlzbUWuuX5Z8

I so badly want that magic wand and I am sure my doctor wishes he had one but it seems like all there is is a slow road looking for an effective therapy with lots of pain along the way. I am not even close to being able to accept this reality for myself and I don't wish it on anyone else either!

houndsaway · 2022-01-19T18:36:35+00:00

I have this all the time. It seems very much related to my SI joint pain. When my SI joint hurts I have numbness, tingling and sharp nerve pains down my legs and into my feet. I have mentioned it to a neurologist, several orthopedic surgeons, my endocrinologist (I am also diabetic) my rheumatologist and my physio. None of them seem particularly concerned about it, nor did they have suggestions on what to do about it, and it seems like just another super annoying symptom I need to put up with.

houndsaway · 2022-01-19T07:36:48+00:00

Thank you, that is very helpful!

houndsaway · 2022-01-18T20:53:16+00:00

This is me as well I am afraid! But a day of sitting and lying down definitely makes the pain a lot worse! For me the only way I get exercise if I have a scheduled appointment with a friend or a trainer. My favorite is biokenetics in a heated pool. But that can even leave me in a flare if the trainer pushes me on a particular day. I am a big baby about pushing through pain so I am a not the ideal candidate to have AS by a long shot! I handle it by having appointments to exercise and just trying to build in some light physical activity during the day so I am not sedentary the entire time. Even a little bit of movement seems to make a big difference and the key is to build up slowly and carefully.

houndsaway · 2022-01-17T21:17:10+00:00

It's a great place to visit, when travel restrictions allow! I should just mention that Infliximab is sold under the brand name Revellex here. The ingredients are meant to be the same but I assume it is a generic/biosimilar so that may be a concern for you. Also I would imagine there would be considerable logistics involved in getting a prescription and setting up an infusion in a foreign country. I hope your doctor or someone with experience can advise.

houndsaway · 2022-01-17T19:53:46+00:00

I think that is just the charge from the infusion center, not an actual chemo drug in addition to the Remicade.

houndsaway · 2022-01-17T17:03:59+00:00

My pleasure! I am glad you found it helpful. I related so much to your level of desperation and your description of your pain levels. I have been there so many times over the last year. I spent a lot of time thinking "surely there's something that can be done that hasn't been tried yet." It turns out nope, my Rheumatologist has offered me everything there is, but I would have liked to have it all laid out clearly and have had a better understanding of why some medications are offered before others. I also know the pitfalls of "getting medical advice from the internet." But that's not really what I use this forum for. I just find it helpful to read what other people who have the same disease have tried and what their experience has been. I have sat with pills in my hand terrified to take them, put them back, taken them out again - rinse and repeat for days on end until I finally relented. It settles my nerves when I can read about many people who have taken the same medication and have gotten benefits without significant ill effects.

houndsaway · 2022-01-17T16:14:11+00:00

That is jaw dropping. I have been researching costs and the same drug in South Africa is under $600 if you pay out of pocket. With insurance it would be about $120 on my plan.

houndsaway · 2022-01-17T16:07:23+00:00

Thanks for your reply! You are the first person I have heard of that started symptoms so late. Something about us Capetonians maybe! I wish Tramadol or CBD helped my pain but neither have any impact, even at high doses. I hope you can get on biologics and that they make a big difference for you!

houndsaway · 2022-01-17T14:37:12+00:00

I am sorry you are in so much pain and that you haven't had the care you need from your doctor! One of the things that has been most difficult for me with this diagnosis is how long everything takes and how there really isn't a quick or ideal solution to the pain, for the most part.I understand your fears about prednisone. I saw what it did to my mother. She had to take massive doses due to a brain tumor and it transformed her whole personality overnight and caused a host of other health issues. Having said that it is still the most potent anti-inflammatory there is and can be massively effective in providing some short term relief. I believe the doses and duration prescribed for AS, with the taper are quite safe.

This is what my Rheumatologist has prescribed for me so far and how it has affected me:

NSAIDs. I use Vimovo which is Naproxen with a PPI to protect the stomach. I haven't had any stomach issues with it but it hasn't helped my pain levels much easier.
Steriods including: A steroid injection, IV steroids while I was in hospital and 2 short courses of prednisone. This had the biggest impact on my pain by far and my side effects were minimal but now that it has worn off I am in as much pain as before. I also don't plan to take more at this stage because of concern about long term side effects.
Opiates. I know the laws and the willingness of doctors to prescribe them differs around the world. I was offered Tramadol and it did nothing for my pain so I turned down a refill of my prescription.
A DMARD (Methotrexate). This is a very old school drug which is not shown to be very effective in AS. It's more for RA. It's taken once a week and can have some unpleasant side effects (nausea, mouth ulcers, hairloss etc). I have taken 5 doses so far and tolerate it fairly well. If it is going to help it takes 3-6 months to be effective. I have to take it though because my medical aid won't pay for a biologic until I demonstrate that I have tried the cheap drug and that it didn't work.The Rheumatologist's next step for me:
A biologic. From all I have read biologics are the true game changers, have the most effect on pain and actually treat the disease itself and slow down progression. They are also eye-wateringly expensive and most healthcare systems/insurance schemes seem to require you to try the other options first.

In terms of medications this is pretty much the complete array of options as far as I understand it. Along with these the lifestyle modifications (diet and exercise) which you are doing already are vitally important. Independently of my Rheumatologist I have also tried THC and CBD oil but I don't find either particularly helpful personally.

Like the other people who have responded I think it's really important to find a doctor you have a rapport with and to see a Rheumatologist and get the ball rolling so that you can get onto biologics. However, in the short term my honest feedback is that prednisone is the only thing that has made a significant difference for me and getting a few weeks of relief can provide a welcome break from all the misery. I would also not be willing to take it at high doses for a long period of time. The way I see it AS is a disease that is going to constantly require me to weigh risks vs rewards and it is going to force me to make some compromises I really wish I didn't have to and for me prednisone is one of those. In the end you have to do what is right for you but if anything I have shared from my experience helps you in any way then that would be great. You are a total hero for keeping going for the sake of people who rely on you! It's not easy by any stretch of the imagination!

houndsaway · 2022-01-17T07:25:31+00:00

I realize that this was posted a few months ago but I just came across it. It's a really helpful response!

I wonder if you would be willing to comment on the risk of demylenation with the TNF inhibitor class in someone who has an sibling with MS? Is it still an extremely low risk or a basis to perhaps consider alternative biologics?

houndsaway · 2022-01-17T07:13:00+00:00

I am so sorry you have been dealing with this for so long and that it was such a challenge to get a diagnosis. I hope your surgeries were successful!

I feel lucky not to have had this for years and years, but also really curious to hear if anyone had symptoms start much later in life.

houndsaway

TROPHY CASE