Spondylitis Association of America

New person looking for advice :) :)

Posted By: SadieP1989

New person looking for advice :) :) - 01/22/19 05:41 AM

Hi, I'm Sadie, this is my first post and I would like to share my history and ask for a bit of advice, as I'm just in a bit of an emotional rut smile. Like many of us, I'm just having a hard time knowing what to do next, and how to best help myself.
Just for a bit of introduction, my rheumatologist has not told me that I have AS, though the term has been given from the medical assistants in his office to me and my GP, I believe that technically he has termed my condition as spondyloarthropathy (undifferentiated until something happens to turn it into AS). I am HLAB27 positive and I have a family history of RA and autoimmune disease. That being said!
I have been taking ibuprofen in high doses daily for almost ten years, and occasionally before that for maybe 2-3 years. There were several months that I took it in dangerous doses (way higher than recommended doses) because I didn't know any better and I was desperate for relief. I'm 29 now and I was much younger then. I took Humira for 5-6 months last year and it was not working ( though I believe a flare was beginning when I started it) and about 6 weeks ago I began remicade (2 doses) and so far I can't tell if it's helping. My rheumy wants to begin a DMARD when he finds out if my liver is okay. My enzymes are elevated and I have pain in that region so he's ordering an ultrasound.
Anyway, my pain seems to be in so many places. When I was about 7 I started having chronic UTI's and kidney problems, I also had occasional gastro issues but nothing really serious. I had a bad viral infection at 11 that caused leg weakness and I had to have PT to gain mobility again. Around this time I started getting headaches and migraines that have never stopped. I noticed a lump in the back of my neck around that age as well, and after feeling around noticed that my spine protruded more right under the base of my skull to the left, and I've since noticed some growth and that others don't have that protrusion. Doctors aren't concerned so I'm probably worried for nothing.
Joint pain started when I was fifteen or so in my knees, then around 18 in my low/mid back. Then it got worse around 21 in my back, and I started to get stiffness. Around 23 the sciatica started and hit hard and I had morning stiffness with it (you know the kind that you have to roll/fall out of bed) but I didn't know what was happening and I often wet myself before I could get to the bathroom. It was really scary and upsetting as I didn't know what was happening and that any symptoms were related. At the same time I began having a hard time with my heels and I would walk around on my toes. About 24 or so I started getting pain in my wrists and shoulders. Some time around this point my knees started getting really bad and started swelling a bit. I also began having some (nerve?) pain around my thighs, bottom, groin, patches of burning, I would constantly check the areas for rash because it would burn so much. Around 26 the outer left hip began getting really sore. I began noticing that my extremities (especially my feet) would fall asleep or become tingly for no reason. My finger joints began to become affected as well.
This past year at 28 pain has started to become worse in my middle/upper back, the back of my neck, the right side of my ribs (wrapping from the back around to the front and worse when I breathe in, though the rheumatologist thinks this doesn't have anything to do with the spondy), horrible HORRIBLE stomach aches, a separate pain that's just below my ribs that my doctor thinks could be my liver, and fatigue worse than ever before. Just this year in January muscle spasms from my mid back up to my neck have started first occasionally and now are frequent.
I have expressed to the rheumatologist my major concerns, and I answer questions, but I feel like he expects the biologic to work and he doesn't understand why the first one didn't work and the second one hasn't started to work yet. I want sooooo badly to stop taking the ibuprofen but the pain is uncontrolled without it. I've started a low starch diet because nothing is helping and I'm so desperate for relief, I do think it helps when I'm strict with it, but my doctor just seems to dismiss that. I take a muscle relaxer in a low dose at night too and I use a heating pad while I sleep but that's all.
Obviously just like everyone else I just want to be able to reach a functional level of pain control and I would love to do that without the ibuprofen because I really feel like it's slowly killing me. I know it's a little dramatic smile. But these stomach aches are horrible... There were a few times that I was throwing up with some blood coughing with some blood a year or so ago and they wanted to do an endoscopy and I chickened out. So I don't know what's going on inside there. I feel like my joint problems and AS/spondy complications are progressing way too fast, probably really paranoid. The medical assistant at my rheumatologists office just keeps telling me it's a flare because I keep telling her how much it hurts and how tired I am, how terrible it's been lately and that I just want to be a good mom. I can't tell if it's a flare or if everything is just getting worse really quickly all at once. This is really long. I suppose I'm just hoping someone can give me some advice about how to stop the ibuprofen and feel better. I am constantly on here and reading everything I can about AS and besides dieting, I feel like I'm just not in control of my own body anymore. It's just so frightening.
Thank you, so much, for reading this ridiculously long post, I know I'm not great at forming a concrete question but I'm sort of lost and wandering so if someone has been here and can point me in the direction I should be taking, I'd be so grateful. Thank you thank you!
Posted By: Tacitus

Re: New person looking for advice :) :) - 01/22/19 06:15 PM

Hello, Sadie:

I've started a low starch diet because nothing is helping and I'm so desperate for relief, I do think it helps when I'm strict with it, but my doctor just seems to dismiss that.

Get another doctor!

Anyone with AS can prove the connection between food and symptoms by simply fasting for 4-6 days. Now You are under the impression that a diet low in starches is helping; I can tell You from direct experience that this is the correct direction and I do not know any better! I was able to control all AS symptoms for a very long time by being very strict, as per Carol Sinclair's book.


Posted By: Winston

Re: New person looking for advice :) :) - 01/22/19 06:36 PM

Welcome to the forum. That's a long post, but I'll wade in and hopefully offer you something to think about. As I understand it, you've just recently started Remicade after previously trying Humira but you're still very concerned about the amount of ibuprofen you're taking?

First thought that pops in my head about that is this: Why are you still taking ibuprofen at all given the apparent damage it has done to you? There are many other options, including other NSAIDs, that are less damaging to the GI tract than ibruprofen. Celebrex is often mentioned as the most GI friendly NSAID. Have other NSAIDs been offered to you, and, if so, have you tried any of them? Have other types of drugs been offered to you, aside from the muscle relaxer you take at night, to help with the pain? Some non-narcotic options include gabapentin and pregabalin (Lyrica), both of which are anti-seizure/fibromyalgia drugs sometimes prescribed off-label to spondylitis patients.

The second thought that pops in my head relates to your failure to get an endoscopy to see what's going on in your GI tract: I've had an upper endoscopy, and it was no big deal. I literally remember nothing about it. (That could be because it was done in conjunction with a colonoscopy, the preparation for which I remember all too well). So is it the procedure that worries you, or what the procedure might uncover that worries you? If the latter . . .well . . . I would like to fuss at you about that, but I don't yet know you well enough. Have you talked to your doctor(s) about your fears? Have you considered seeing a mental health professional about all your health-related fears/worries? There are psychologists who specialize in working with chronic pain patients, and seeing one can be extremely beneficial. It's important that you realize that you're not alone in your suffering. The folks at this forum can help you a lot, but it's nice to be able to sit down with someone to talk about these things face to face. Importantly, a properly-trained therapist can help you formulate a plan of attack (so to speak), communicate more effectively with your physicians, and develop strategies for distracting yourself from your pain.

My final comment relates to your previous trial of Humira and your current trial of Remicade: Doctors now recommend trying a biologic for at least 6 months before giving up on it. It really does sometimes take that long for the drug to work. So don't despair, and don't give up on it too soon.
Posted By: SadieP1989

Re: New person looking for advice :) :) - 01/22/19 08:24 PM

Thank you both smile I've sort of had this all bottled up for a while. Nobody really gets it.

Tacitus: I am really considering finding a new doctor, as I feel that I need a doctor who will listen to me. I think the diet is beneficial, and I think you are right. I've read a lot of what you've written and I agree.
Winston: I've been offered celebrex and it did not help, I tried it for two or three months. I also tried Voltaren ointment, this also did nothing. They also tried amitriptyline and the daytime sleepiness was too much for me to take care of my kids, I tried cymbalta and I also couldn't take the side effects. I have asked to try gabapentin or Lyrica as I've heard good things about them and have been told that it would be too much medication. A couple of years ago before my diagnosis I was prescribed tramadol for about a year and that helped some, but they stopped it suddenly and now my GP says all the time that she sees my history of abuse in my chart. So I'm not planning on asking for that again. I don't want to take Ibuprofen because it hurts my stomach but if I don't take it everything else hurts. Fasting might be what it takes to kick it.
I didn't do the endoscopy probably for a mixture of both reasons. I guess I should consider talking to someone at some point and deal with this like a grown up smile.
I was asking my rheumatologist to give the Humira a try and keep me on it. I kept telling him I didn't feel relief but that I had faith in the medication and I had no problem in waiting for it to work. He wanted to switch to remicade. Like I said, he seems to think that everything should work very quickly. He asked if I was feeling relief from the remicade when I came back after 2 weeks for the 2nd infusion. He seemed confused that it wasn't helping yet. Same with Humira. I don't know maybe I'm bad at reading people.
I appreciate the feedback and support so much. This just isn't anything that I feel like I can talk about with friends and family. I'll work on things smile take care!
Posted By: jtmak

Re: New person looking for advice :) :) - 01/23/19 05:17 AM

Hi Sadie, Great decision to want a doctor who will listen. And for opening up about what you're feeling and how your body is feeling. You deserve to be heard. "We need to feel in order to heal". (Author unk.) I
too can not take advil/naprosyn because of terrible gi pain. I was given Mobic, a prescription anti inflammatoy rx that I started in Dec. It has definitely taken the edge off my pain. You might ask your doc about it. Good luck!!
Posted By: SadieP1989

Re: New person looking for advice :) :) - 01/23/19 06:05 AM

Thank you, Jtmak. After reading even more perspectives I'm feeling more confident about my desire to find a doctor willing to listen.
Mobic is actually another one that I've tried and forgot to list smirk about two years ago the doctors that I was seeing at the time we trying really hard to find a med that could be taken every without significant risk of damage I think. They tried many for a couple months at a time, or for some as long as I could endure. Mobic just didn't help me. I am sure that there must be something that will help though! There are sooooo many! This really gives me more hope.
And I'm going to try a short fast beginning tomorrow. Thanks to everyone for listening and for all the advice. It's really so great to know there are other people in the same boat and we are all here together smile.
Take care everyone!
Posted By: SouthernMoss

Re: New person looking for advice :) :) - 01/23/19 03:41 PM

Welcome Sadie. I agree that you need a rheumatologist that you are comfortable with, preferably one who has experience with AS. I also agree that you need to have the endoscopy done right away.

You don't mention physical activity, but staying active is an important part of a treatment plan. Physical activity releases endorphins, which reduce our perception of pain. If you haven't been physically active, start slow with a short daily walk. I do water aerobics in a heated pool at our local senior citizens center (You don't have to be a senior. We used to have a young lady in her mid 20's with rheumatoid arthritis in our class.) SAA (the organization that provides this forum) has an exercise DVD that is specifically geared towards people with spondy. You can find it on their website. Yoga is another good option. Find something that you like and do it consistently.
Posted By: Cake

Re: New person looking for advice :) :) - 01/23/19 09:00 PM

I didn't start making real progress until my third rheumatologist. He was the first one to really listen to my report of my symptoms and then to just simply never give up. He also acted like he really cared about me and cared about how the disease was affecting my life. We tried medication after medication after medication. I'd recommend keeping a log of which ones you've tried, how long you took them, dose, responses both positive and negative, etc. This will save you time in the future and I've found that doctors really appreciate having this sort of information - they do not have the time to pay attention to this level of detail in my experience, even my exceptional rheumie. We had to get creative with finding medications that work. I'm on lower than normal doses on a couple of drugs because they do help, and the lower doses limits the side-effects. If I go any higher, I can't tolerate them at all. As for the NSAIDs, I could not tolerate any of them until we tried indomethacin ER.

My first two rheumies are what I would consider very average. They tried a few drugs, but when I kept getting side-effects they started acting like they were not sure what to do for me. The third did not have this attitude at all. And as a result, through much trial and error, we were able to find a combination that worked for me. I really believe the difference was in the doctor's mindset - as all three had the knowledge of all the same medications out there. It wasn't as if we were using some super-rare medication or anything.

best wishes to you
Posted By: WhiteCell

Re: New person looking for advice :) :) - 01/25/19 02:25 PM

Your history would argue for a specialty center medical opinion. These are centers of excellence for many diseases including Rheumatology. Since your history is well known and clinical notes would be available, I would suggest that you consider a 2nd opinion at one of these centers, most of which are on the East coast. Here is that list.


While ibuprofen is helpful, as others have said, given your symptoms it sounds ill advised to continue it's use. If your doctor has not spoken to this issue with you, that in itself is reason to chart a course to a new MD. Remicade was originally created for Crohn's and that may help you however, you have been throwing up blood and should stop taking it. GI bleeds can be very dangerous to you....and yes I get that the pain is terribly distressing. It's alarming that this has not found alternatives with your symptoms.

For these reasons and your described history if in your shoes I would make a 2nd opinion appointment with the Hospital for Special Surgeries in NY City. Yes it will involve travel, hotels, getting someone to watch the kids -- but you are young and need answers. The center is rated very high and given your observations of your spine they would be an excellent choice. You will need your doctor's referral there, records and notes as well as any tests performed.

You will also need your courage and candor. Seeking answers is a challenge, Not seeking them is worse, so you should be proud that you have written to the people here. A pat on the back but there is more to come.

Life throws things at us, we don't have the option to back off as backing away only makes it worse. Yours is such a case. If you are not mad as hell at this disease you should be. It has the potential to take away your life, and, unfortunately, it has fallen to you and only you to find answers. Standing still, treading water and staying your current course will, in my view, only expose you to greater harm.

Get with it, your life and your health depend upon it. Be Bold.

Best of Luck to You.
Posted By: SadieP1989

Re: New person looking for advice :) :) - 02/18/19 06:53 PM

Thank you so much for the continued advice. Southernmoss, thank you for that, physical activity is something that I think I could improve, I do brisk walking about 6 hours a week, and in the summer I do some swimming, and after I read your message I tried to do a yoga video from the internet with my daughter that was geared toward people with AS, though I was trying to be serious she was doubling over in hysterical laughter the whole time so I'm not sure when I will have time away from the giggle monster to try that again lol. I'm thinking swimming and walking will be good for now. The normal work of having 4 kids is usually more than I can handle and leaves me feeling very inadequate as a mother when I see other moms going so above and beyond. I know it's all very normal to feel this way. I think I'll get to the acceptance of my limits and making the most of what I can do, finding the balance. I just want to be everything for them.
Cake, thank you for sharing your experience. This is my second rheumatologist, but the first one I only spent maybe 3 months with because she literally told me it's possible that most 24 year olds have degenerative disc disease and osteoarthritis, and it's common to be HBLA27 positive (I'm probably jumbling the letters in that) and that they just don't all come in with back pain getting scanned for all of it. If we scanned every person in their twenties we would probably be surprised with all the problems young people have, but I came in complaining so they found these issues. My doctors there as well (this was at UofM which I had been told was wonderful) told me that they would only address one issue at a time, when I was complaining of several joints hurting as well as my back and migraines. So I had to pick a joint or something lol. This rheumy is nicer, this doctor is worse, I am just tired. I know everyone else is too lol. I have a new doctor in the works but I'm reluctant still to switch rheums.
White cell you are so kind words. I think that this remicade is beginning to help my back pain some. I still feel like the rest of my body is giving up on me. I want to live my life, I only have one. It's very frightening to think of all the obstacles there are when I feel like this is not the priority right now. There is always something important with my kids going on.. But this has given me a lot of hope that I can do something to improve the way I'm living. I will look at that list and consider a specialist like that.
Thank you again to everyone for listening and giving me so much. I'm very glad I wrote smile
Posted By: Steven1

Re: New person looking for advice :) :) - 04/25/19 11:44 PM

Welcome I’m new too. I’m desperate too and today is Day 2 with no starch. My dr tells me today what I want as no direct studies. But I’m desperate and will try anything. I know zero starch foods are very healthy too. I have huge empathy for you.
Posted By: Caturday

Re: New person looking for advice :) :) - 05/01/19 02:48 AM

It's a hit or miss zero starch. I did it for a month and it really didn't do anything for me. Then again i use coconut flour as a substitute for fiber but I don't think it has any starch in it as it's high quality non-gmo, no soy, no preservatives, and no gluten etc... etc...
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