Spondylitis Association of America
Posted By: Kait Please help! Looking for your input! - 09/12/12 10:49 PM
My story... how do I make it short? Well, I'm a 22y/o F who has been suffering with chronic pain for 4 1/2 years now. At that time I was in a firefighter training class and I was barely 18. Towards the end of class I was sore, but we obviously did a lot of heavy work... so I ignored it. The pain continued and got worse. Once the class was over I went back to work. I remember having days where it was hard to stand. If I had to stand for any length of time I would be in a lot of pain, including a sharp pain shooting down the back of my left leg. My PCP sent me to a back doctor. He took x-rays and said they were normal and that I was much too young to possibly have any disk problems. He claimed that I strained my back and sent me to physical therapy. My PT was convinced, with my pain, that I had a disk injury and encouraged me to get a second opinion. So I saw this new orthopedic surgeon. I saw him for over a year. He did more x-rays... normal. Did an MRI and said that there was SLIGHT bluging of a disk or two, but nothing that should be causing the amount of pain that I had. He gave me pain meds which I was NOT happy to take, but it got me through the day and helped me sleep. He sent me back for more physical therapy and eventually aqua therapy as well. PT didn't help. Biofreeze and electric stim felt good, but it was only short term. Eventually he told me I was at my MMI (maixmum medical improvement). He basically said that I was never going to get better and that I Would have to deal with the pain. Being in that amount of pain at that age and being on pain meds was NOT ok with me. I saught out help from another orthopedic doctor. He did another MRI of my full spine- cervical, thoracic and lumbar. Said that he didn't see anything abnormal but believed my pain. He was concerned about the numbness in both legs that I reported. I get numbness in both my legs if I sit in a certain position (without any pressure on my blood vessels which can cause numbness in healthy people). SO- he sent me to a neurologist who basically told me that he thought that the cause of my pain was from my bipolar and that I need to "chill out" and that I should be put on an anti-anxiety medication. Well for any of you who've had people tell you that your pain isn't real or that it's in your head... you understand EXACTLY how AWFUL it felt to hear that! I tried another neurologist. He did a nerve conduction test and drew a bunch of blood. The nerve test was normal and the bloodwork was normal other than a vitamin D and iron deficiency... so I started taking some supplements for that. With no improvement, not even in my fatigue. He at least did his best trying to manage my pain for me. We even tried Prednisone and an anti-inflammatory. He eventually got sick so I had to find another doc. I started seeing a chiropractor who was recommended to me. He looked at my x-rays and MRIs and told me that my left leg is shorter than my right leg and that I probably have SI joint dysfunction. None of the other docs ever mentioned this. He made me special orthotics which I wear in my shoes everyday. I'm no longer crooked, but I still have pain. He tried some gentle manipulation and even an SI joint belt, but no luck. He recommended me to a spine and pain management doctor who I see now. We tried corticosteroid injections in both SI joints, but no luck. He did a CT scan which he said showed air bubbles in my SI joints which in a 22y/o is indicative of inflammation... so we knew that inflammation was the problem. He tried test injections for a nerve ablation and it helped! This meant if they went through with the actual nerve ablation (the test injections were only lidocaine) that it SHOULD work. BUT- my insurance denied it... OF COURSE. He mentioned the possibility of Anklyosing Spondylitis.... but he said that it was very hard to diagnose and could take years. So, he didn't know what else to do so he recommended me to a rheumatologist. The rheumatologist put me on another course of prednisone with no results. He also tried me on another anti-inflammatory, Arthrotec, which gave me a lot of stomach pain. He recently took some more x-rays which were reported to be normal. He said that he wanted to see if inflammation was the problem... even though my pain management doc said that it DEFINITELY was the problem (and could be seen in the CT scan). So now they are saying different things. Rheumatologist wanted to do ANOTHER MRI but insurance denied it. SO I'm basically stuck right now. I have no true diagnosis and insurance doesn't want to pay for anything anymore. I really wanted to see if my symptoms sounded like anything that any of you had experienced in the past. It would be nice to have some sort of direction, if you guys think that it sounds like it could POSSIBLY be AS or if it's definitely NOT AS... either one would be a help. I was negative for HLA-B27, most of my bloodwork is normal, but I have a slightly elevated rheumatoid factor. I only have pain in my SI joins (which can radiate into my hips) I don't have pain in other joints. I'm stiff in the morning, after a ride in the car, or after any lack of movement. My most painful times are in the morning and at night. Movement usually helps decrease the pain, but I'm also not able to stand or walk for LONG periods of time (ie. walking through the entire mall or a large grocery store). I'm ALWAYS exhausted. It's hard for me to stay awake. I have little motivation to do anything anymore. I literally have no idea what to do anymore. The docs don't seem to have any clue. I don't know if I just try yet ANOTHER doctor and if I do, which specialist do I try again.... *SIGH* I just want to talk to people who get how awful it is to be in pain everyday.... to always be exhausted and have no motivation. It's an awful feeling being 22 years old and on pain meds and not being the active person I used to be...... Thanks for any input you offer... it's greatly appreciated....
Posted By: WhiteCell Re: Please help! Looking for your input! - 09/12/12 10:59 PM
Mayo Clinic Rochester MN.
Posted By: tiabird Re: Please help! Looking for your input! - 09/12/12 11:13 PM
Kait, you have been through so much in your young life. I would indeed have the pain management doctor along with the rheumy have the insurance reconsider that nerve burning if you had a positive response to the test. I do understand your pain and your frustration as I too have pain that is not being treated properly. Can they increase your pain meds?
Posted By: Kait Re: Please help! Looking for your input! - 09/12/12 11:18 PM
I'm currently taking Vicoprofen 7.5/325mg 3x a day. It's a small dose.... but I'm 22... I don't like taking these at all. I'm not sure which I'm more nervous about... asking the docs to increase the dose, or taking it. I know an increase certainly wouldn't help with my fatigue. I wish my insurance would have paid for the nerve ablation... but they said even if we appeal their denial, that there is no way it will get approved because the procedure itself hasn't been approved (I assume by the FDA). I think they just don't want to pay for it... I don't know what to do...
Posted By: katb Re: Please help! Looking for your input! - 09/12/12 11:37 PM
Hi Kait,
Sorry you are having such a hard time, most of us here know the frustration that you are dealing with in trying to get a answer for your pain. Like you I am HLA-B27 negative but my blood work isn't normal and I have visible damage on x-rays. Of course I am almost twice your age, grin but my early symptoms started at 17. It does seem odd that you didn't respond to Prednisone if it is inflammation, maybe they didn't keep you on it long enough? I usually respond within a few days and it is great relief though certainly not good for long term use. I think that there are several people here that use an NSAID patch rather than pills and have some success with that. Maybe one of them will see this post and respond with suggestions. I think that they can still cause some GI issues but are not as bad as the pills. You have come to the right place for support, there are a lot of great people here. I hope you find something that works for you.
Posted By: Kait Re: Please help! Looking for your input! - 09/12/12 11:46 PM
They had me on 10mg of Prednisone twice a day... for about a week, week and a half....
Posted By: sharpthings Re: Please help! Looking for your input! - 09/12/12 11:47 PM
I was 22 when the pain down my legs through the burdock's started. De did xrays tried nsaids even bexrea when it was on the market. Just this year, about 2 months ago I got my dx finally. I don't know if it was because my disease became so active recently Oe simply finding the right Dr. Have they tested your SED rate in your labs? If not, ask for it. I have seronegative arthritis so my RA and ANA are fine but my SED is extremely elevated. But I am HLA-B27 positive. Good luck ask for a second opinion from a rhumey!
Posted By: iviary Re: Please help! Looking for your input! - 09/13/12 03:27 AM
I've never been on true prednisone, but rather 5-day tapers of methylprednisolone (aka medrol packs) during major flares. Others who have done courses of prednisone will probably chime in re: whether 20 mg daily of prednisone for 1 week would "work" for them. Medrol definitely helps my inflammation; it improves things but definitely doesn't make it 100% better, or anywhere near it. Also, some things tend to flare back up as soon as I go off of it. I guess it depends on how you define whether it works for you. If it did absolutely nothing for you, that does seem indicative that your pain isn't inflammatory in nature. Have you tried any nsaids besides arthrotec? Maybe advil/ibuprofen, aleve/naproxen or aspirin? They would need to be taken at antiinflammatory dosages to see real results, but have these over-the-counter options ever helped your pain at all?

For what it's worth, I have never had any kind of positive blood test, short of vitamin D deficiency and one barely elevated WBC. I also do not have signs of inflammation or damage on x ray or MRI. I was diagnosed based on symptoms, family history, medication response and a nuclear bone scan (my current rheumatologist actually refutes the worth of a nuclear bone scan for diagnosing inflammatory arthritis, but she accepts my diagnosis anyhow).
Posted By: NotMeToo Re: Please help! Looking for your input! - 09/13/12 04:05 AM
I hope you don't mind. i have taken your post somewhat out of order. But, you said:
Originally Posted By: Kait
I really wanted to see if my symptoms sounded like anything that any of you had experienced in the past. It would be nice to have some sort of direction, if you guys think that it sounds like it could POSSIBLY be AS or if it's definitely NOT AS... either one would be a help.
How about a big MAYBE? Some symptoms you mentioned do sound like they could be due to a Spondyloarthropathy. Other things you have mentioned point away from Spondyloarthropathy. A diagnosis of Ankylosing Spondylitis does require that you meet specific diagnostic criteria. Radiographic changes to the SI joints are necessary for a definitive diagnosis of AS. Without radiographic SI changes, you could be diagnosed with another form of Spondyloarthropathy such as Undifferentiated Spondylitis (Non-Radiographic Axial or Peripheral Spondylitis), Reactive Arthritis, Psoriatic Arthritis, etc.

Originally Posted By: Kait
I don't know if I just try yet ANOTHER doctor and if I do, which specialist do I try again....
Rheumatologists are the specialists that deal with AS and other Rheumatic diseases. You need a good Rheumatologist - your current one or a different one if you choose. Orthopedists, Pain Management Physicians and other specialists have their place, but they really can not accurately diagnose and treat Spondyloarthropathies.

Originally Posted By: Kait
He did a CT scan which he said showed air bubbles in my SI joints which in a 22y/o is indicative of inflammation... so we knew that inflammation was the problem. .... He mentioned the possibility of Anklyosing Spondylitis.... but he said that it was very hard to diagnose and could take years. So, he didn't know what else to do so he recommended me to a rheumatologist. ...
Referring you to a Rheumatologist was the correct call. CT scans are not generally used in the diagnosis of AS. In fact, according to the ASAS Consortium (a highly respected group of AS experts) CT scans detect bony changes but DO NOT show active inflammatory changes. From the ASAS handbook:
Originally Posted By: ASAS Handbook
Active inflammatory changes can also not be seen by CT, and fatty degeneration of the bone marrow (as an early sign of chronic changes) is only detectable by MRI and not by CT.
I do not think that it is accurate to say that CT detected air bubbles in the SI joints are indicative of inflammation in a 22 year old or anyone else for that matter. CT Scans of bones and joints do not show active inflammatory changes.

Originally Posted By: Kait
He recently took some more x-rays which were reported to be normal. He said that he wanted to see if inflammation was the problem... even though my pain management doc said that it DEFINITELY was the problem (and could be seen in the CT scan). So now they are saying different things. Rheumatologist wanted to do ANOTHER MRI but insurance denied it. SO I'm basically stuck right now. I have no true diagnosis and insurance doesn't want to pay for anything anymore.
The X-rays and MRIs your Rheumatologist prefers are the standard tools used to look for arthritic inflammation. CT Scans and Nuclear Bone Scans are not considered accurate diagnostic tools for this disease. Your Pain Management Physician may be correct in saying that your problem is inflammation, but CT scans do not prove that. The fact that you have not had a good response to NSAIDs and prednisone would lead a Rheumatologist to order other testing to "prove" inflammation. Rheumatologists are also trained to detect inflammation by feel (edema, warmth, etc.) Pain Management docs do not generally have that expertise. You need a Rheumatologist to diagnose or rule out Spondyloarthropathy.



Posted By: NotMeToo Re: Please help! Looking for your input! - 09/13/12 04:21 AM
Mary,

i am sure your new Rheumatologist agrees with your diagnosis because of all the other factors you mentioned. According to the experts (ASAS - again),
"Scintigraphy (nuclear bone scan) has been used for many decades for the detection for active inflammation in patients with SpA, but no longer plays a role in diagnosis and management of patients with SpA because of limited sensitivity and specificity13 and has been replaced by MRI."
When we asked about the value of a Nuclear Bone Scan for one of our kids, the Pediatric Rheumatologist told us that bone scans were too broad. He explained that "hot spots" could indicate anything from arthritis to cancer to trauma to infection. There was a time period that Nuclear Bone Scans were used - but not so much anymore.
Posted By: Tacitus Re: Please help! Looking for your input! - 09/13/12 05:00 AM
Hello, Kait:

I absolutely lean very strongly towards AS; my "BINGO!!" moment was when You said:
Quote:
My most painful times are in the morning and at night. Movement usually helps decrease the pain


Of course I will pull out my old non-B27, Pre-AS chestnut.

You should be able to figure things out for Yourself, and I have full confidence that You will be able to restore Your energy and confidence and make AS into a minor nuisance instead of a career!

HEALTH,
John
Posted By: iviary Re: Please help! Looking for your input! - 09/13/12 05:47 AM
Originally Posted By: NotMeToo
Mary,

i am sure your new Rheumatologist agrees with your diagnosis because of all the other factors you mentioned. ... Pediatric Rheumatologist told us that bone scans were too broad. He explained that "hot spots" could indicate anything from arthritis to cancer to trauma to infection. There was a time period that Nuclear Bone Scans were used - but not so much anymore.


Exactly right, and almost word for word the explanation that my rheumatologist gave. She has stayed up on her research more (and is actively involved in research), and is a bit more "new school" than my diagnosing rheumatologist by virtue of her age; she's probably 40 and he's 75. The fact that he wasn't aware of other not-overly-recent changes in methodologies and treatments was the primary reason I went looking for a new doctor. The nuclear imaging he performed was the only diagnostic test to support inflammation, but as you say, there's no way of knowing that it was actually inflammation lighting things up (although given how the hot spots aligned with my myriad sites of polyarthritis pain, it seems the most logical explanation).
Posted By: mpc2012 Re: Please help! Looking for your input! - 09/13/12 06:28 AM
I feel for you. I went through much of the same thing and I went through 4 years of trying to figure out what was wrong with me and went through several doctors to figure out what was wrong. My parents hid that my father has AS from me so I had no idea it ran in my family. I must have seen 20 doctors. I remember one doctor telling me just to take 20 Tylenol per day and not to worry about it.

Finally, I ran across a generalist who said it sounded like I had AS. She ran the marker test and it came back positive. Finally, I was put on treatment and I was doing better. I understand how frustrating it is and what you are going through.

Just because the steroids didn't work doesn't mean you don't have AS. I am on anti-inflammation medicine and Humara and I still have pain.

I would suggest you see a good Rhemy and have them run a bone scan and MRI to see if there is any evidence of AS if the marker test came back negative. The best way to tell is if the pain comes back when you don't move around.

For example, if the pain gets worse when you are sleeping or not moving. A sure sign of AS is if the pain intensifies when you are staying still or sleeping. The main symptom for me was my lower back was hurting when I slept and didn't move.

Don't give up. I know its tough but you need to find out if you have it.
Posted By: Shirley Re: Please help! Looking for your input! - 09/13/12 09:51 AM
Originally Posted By: Kait
They had me on 10mg of Prednisone twice a day... for about a week, week and a half....


It's possible that 10mg isn't enough for you. My rheumy put me on a course of prednisone to check my response to inflammation medication - but I was on 40mg for 5 days then 20mg for 5 days. The 40mg helped my spine etc as well as my hands, but the 20mg not quite so much.
Posted By: katb Re: Please help! Looking for your input! - 09/13/12 02:58 PM
I would have to agree with Shirley, my doc put me on the same taper 40mg then 20 then 10 then stop. The 40 really helps and things start creeping back at 20 and then the 10 is like taking nothing. Maybe you could try another round at the higher dose and see if it helps. The blood tests for inflammation can be misleading, a lot of people with AS seem to have normal blood tests but obviously have inflammation because their symptoms respond to anti-inflammatory medication.
Posted By: JenInCincy Re: Please help! Looking for your input! - 09/13/12 03:59 PM
My taper was 20 mg during week 1, decreasing 5 mg/week - for me, and from informally gathering info from folks here on steroid use/effectiveness, the 15-20 mg initial dose seems to be adequate to produce a response in most people. But you need to take it for several days. A 6 day taper is a very different thing.

I'm surprised to see steroid reductions of 10 mg at a time! Seems like usually docs wean people much slower, 5 mg/week or even less.
Posted By: bukami Re: Please help! Looking for your input! - 09/13/12 04:04 PM
you've already gotten a lot of great responses, so i'll chime in with what i can. the thing with this diagnosis is if they don't want to see it, they won't. i had debilitating SI pain starting at age 22, but it wasn't until a few months ago at 27 i was diagnosed. a few years ago at 24 they "ruled out" AS - i.e. the doc never seriously looked for it.

i was diagnosed this year on: symptoms, HLA B27+, visible fusing in my thoracic spine (x-ray), changes in my SI joints (x-ray), and ESR levels that have been elevated for years. my point is, on paper, my case should have pretty easy to diagnose, and it still wasn't. i had to do a lot of the leg work, searching through my medical files and figuring things out for myself. people with less visible evidence have an even harder time.

as far as figuring out if this is AS, i think you should focus your efforts on determining if your pain is inflammatory in nature, and if so, communicating that clearly with the doctors. that's where things got messy for me. when they asked if 'exercise' helped. i would respond with 'sometimes'. walking and moving around helped, running 5 miles on inflamed SIJ's was painful. but in my head, the running was exercise, not walking. so make sure you're communicating the activities that impact your pain - not just general statements that can be misinterpreted.

in any case, even if it isn't AS, keep pushing for answers if you're not feeling better. don't wait 5 more years like i did to start demanding they help you. good luck!
Posted By: cemc Re: Please help! Looking for your input! - 09/13/12 04:05 PM
I find that 20 mg of prednisolone a day for at least five days is enough to dramatically change my pain levels. Anything less than that isn't much use. Prednisolone and prednisone are equivalent in dose strengths, so what you were give should have been enough, though I would always take mine as a single daily dose and not split it. As others have said, sometimes it does take a higher dose to have an impact?

Did you notice any effects at all from it? - sometimes the only noticeable effect is that you actually end up doing a load more physical stuff during the day - just because you can - but in consequence will end up keeping on pushing yourself until you reach your usual pain levels before you stop. That way it might appear your pain hasn't changed, when in fact if you'd just stuck to usual daily activity it would have.
Posted By: Kait Re: Please help! Looking for your input! - 09/13/12 09:32 PM
Thank you all for your input. I REALLY appreciate it. It's certainly nice to know that there are people who actually understand...

To answer a few questions people had... I don't remember the Prednisone or Arthrotec giving me any relief. Other than trying 2 Aleve years ago, those are the only anti-inflammatories (other than the ibuprofen that's in the Vicoprofen that I take now) that I have been given to try.

I'm currently trying to figure out what doc to try next. I wish I could have just had the nerve ablation, but of course the insurance company denied that and it sounds like it won't ever be approved... they won't even approve another MRI now. So I'm trying to figure out what to do next. Do I see another rheumatologist? Do I try a neurologist? I'm also afraid of trying a new doc... you have to wait months to see them (I'm so sick of waiting), I've had a few bad experiences, and I have to tell my story all over again and I'm afraid that if I do see someone knew, that they will want to try something and the damn insurance company will just deny that too. I'M SO SICK OF BEING IN PAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted By: JenInCincy Re: Please help! Looking for your input! - 09/14/12 01:03 AM
Find a new rheumy who will hopefully stand up for you to the insurance ... some companies deny everything but if your doc appeals hard enough they will reverse the denial. Definitely try more NSAIDs if you can get someone to prescribe them.
Posted By: SouthPaw Re: Please help! Looking for your input! - 09/14/12 04:19 AM
Hi I just wanted to say I am also a female and my symptoms are somewhat similar to yours. I have constant audible clicking in my left SI joint when lowering the leg and the leg often has pins and needles in the knee and bottom of foot. My physio said it is certainly inflammatory. Strengthening the pelvis, psoas (super important, abductors and especially glutes through physio has taken away almost all of my latent pain. It really helped. I am still waiting on a diagnosis of an inflammatory condition, and I have systemic inflammation in several other joints. I just wanted to share this in case it helps you in any way.
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