Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Prolotherapy

Here is an interesting link to prolotherapy, written in one of the clearest ways imaginable.

Prolotherapy is "a single or series of injections that stimulates the body to regrow, tighten, and strengthen ligaments or tendons. It is unequaled for pain relief and restoration of normal function for any body joint where connective tissue is weak or has been damaged."

Here is the link:
http://www.diagnose-me.com/cond/C136795.html

After doing a search, it seems that torn ligaments or tendons are rarely reported on KA. However, the inflammation that follows from such damage appears to be critical to the healing process. In fact, the body uses the inflammatory process to repair the damaged ligament or tendon. This article suggests that the use of NSAIDs to reduce inflammation after a tear or strain of a ligament may delay or inhibit the healing.

I read this article with interest because I had lost sight of this important process in my daily KA readings. I was encouraged to go back through my literature on inflammatory arthritis, especially RA (my diagnosis). I realized that torn ligaments or tendons are very rarely mentioned and probably only happen as a result of severe enthesitis so that the tendon frays at the attachment point. I found some helpful information about this process on KA, posted by DavidP:

Bio-mechanical model

Anyway, for those who believe they may be suffering from a torn tendon, it is clearly important to get it checked out and confirmed. If confirmed, it's probably a good idea to chat with the doctor about the healing process and the impact of NSAIDs.

We spend a lot of time here on KA talking about inflammation and how to reduce it. Systemic inflammation triggered by auto-immune diseases can cause damage throughout the body. However, local inflammation may be the body trying to heal itself. I don't think we're talking about a one-size-fits-all here.

This is obviously a complex process. I'm interested to hear from other KA researchers what they have found that may throw some light on these inflammatory processes and how to recognize them and manage them.

So far I havent but I have friends who have and they say it is horribly painful...

Glad you brought this up, Im excited to read the articles.

Hugs,

Lisa

more later, but my first short response is that this is exactly what appears to happen with me. and what i've really noticed is that often first i have inflammation in a tendon or ligament and then it gets a little torn and then i use it and it gets really torn.

i really noticed this sort of process one day. i was in a flare and thus the small amount of typing that normally doesn't bother me too much anymore (it did for the first few years but now the process seems to have moved on to other joints more).....anyway, i had pretty bad tendonitis of the dq tendons. in this state, i tried to open a jar that didn't even have a very tight lid, and i tore the tendon because it was already inflamed.

have done the same thing with a finger.

rotator cuff, tore it a little pulling the covers up one morning, then finished it off pretty good by swimming. that one took a while to heal and the right exercises as prescribed and monitored by my physiatrist.

same sort of thing with feet, hamstring tendons, etc.

since i can't take nsaids, i have to look elsewhere for healing.

i have found that ice helps more than rest, heat, exercise, anything else really, other than cortisone and maybe an nsaid.

so its interesting, i'll have to read that, think about it, but my experience has really been the opposite, until i get the inflammation under control, things just don't heal, but when i get the inflammation under control, things heal better, so definitely something to think about. just goes against my experience that's all.

but do realize this is an off the top of my head response. may change my mind once i've read the article, thought about it more. though i have been thinking about all of this, making observations for years.

my dx btw is "undifferentiated spondyloarthropathy with prominent enthesitis" and what you said was echoed by my rheumy, he said its fairly unusual to see someone with such a severe case of enthesitis (as i have) though i do know several on here that are very much like me. hopefully they will see this and chime in too. i'd love to hear their response to this.

thanks for posting this.

also why i was very interested but very hesitant to consider prolotherapy. this past august when i was flaring big time, i investigated active release technique and prolotherapy as two different things to investigate. decided to go with the first as it was more gentle, less expensive, covered by insurance, and closer to home. i'm still curious but apprehensive about something that causes yet more inflammation because my experience has been that things that reduce the inflammation are good, tendons and ligaments far happier under those conditions.

This is very interesting to me.. I too suffer from torn tendons. I have undergone surgery for my achillies and in and out of boots and cast.. This is a direct result of AS.. My PT is working on message and other therapy to loosen the muscles and the tendons.. so they are more flexible and lessen the chances of them snapping.. However it is a battle we are combating inflammation.. still working on getting that controlled.

How did your rheumy diagnose your "prominent enthesitis", Sue? The literature seems to suggest that ultrasounds are critical to enthesitis diagnosis. I wondered whether you had ultrasound results for him.

based on symptoms, all the tendonitises, torn tendons and ligaments, etc

Does it not worry you that there appears to be some circular reasoning going on here? In other words, 1) a feature of SpA is enthesitis so if you have SpA that could account for the frayed tendons at the insertion points (entheses); 2) you have torn tendons so you must have enthesitis.

A 2008 study on measuring clinical ethesitis in PsA patients states the following:

"it is difficult to be confident that a tender point represents an inflamed enthesis when evaluated clinically and casts some doubt on the validity of tender points to indicate enthesitis."

It also says:

"Measuring enthesitis with a clinical tool gives us information about tenderness at a given point but does not explain what may be causing the pain. To have validity,the measure needs histopathologic or imaging confirmation."

It's an interesting article. Here is the link:

http://onlinelibrary.wiley.com/doi/10.1002/art.23568/pdf

I think I recall that you are hoping to get an MRI or ultrasound to help confirm the diagnosis. I'm a little surprised that such a well-known specialist in SpA would make a diagnosis of prominent enthesitis without imaging confirmation. I'm surprised he didn't say "suspected enthesitis" until he had that confirmation.

not at all.

big difference between tenderpoints and tendonitis, torn tendons and ligaments. agreed if it were just tenderpoints, would be a lot harder to tell.

plus then why the torn tendons and ligaments, how to tell that its enthesitis: 1) rule out rare collagen disorder (EDS) - people with this are hypermobile, i am not, those with enthesitis are not. 2) do antiinflammatories help: in my case nsaids, cox2 inhibitors, cortisone, steroids, and ice all help. a sign that its inflammatory in nature.

then its putting the whole puzzle together, important to not just look at the tail or the trunk of the elephant but look at the whole elephant. in my case: mouth sores, blepharitis, gastritis, skin rashes that flare together with the enthesis inflammation are also indicative of autoimmune inflammatory arthritis.

and then there is the hereditary / genetic link. another piece of the puzzle.

think a good doctor is like a good detective, putting together a consistent story that explains everything.

the MRI of my SI will be to help differentiate AS vs undiff spondy. right now it appears to be undiff spondy, due to the enthesitis and other itises but no evidence to date of fusing. but if the MRI shows changes consistent with AS, then maybe the dx will be changed to AS. its not uncommon for undiff spondy patients to have enthesitis without fusing.

but for me personally all i truly care about is that i have a doctor willing to treat me. sometimes it is nice to understand what and how and why, but other times trying things based on hypotheses and if they work, well, that's really all i care about at this point. after thinking about all of this for the last 12 years and talking about it here for the last 3 years, don't care as much about the academics of it all as i do about treating it so i can just get on with my life.

but yes, undiff spondy and enthesitis can be a challenge to dx. its really putting the whole puzzle together that is important. one piece by itself doesn't really say nearly enough. unless there were one big smoking gun like there is in a lot of other inflammatory arthritises, but without that, it takes someone who can understand the subtleties to dx.

i've posted a few good papers on the topic in general over the last few months, but no time right now to go digging for them all.

PS and the morning stiffness or after being in one position for an extended period of time. and the SI issues. and i'm sure there are more pieces of the puzzle i'm forgetting.

What was interesting in the prolotherapy article that began this post was that inflammation is the body's way of healing torn tendons or ligaments. It makes me think of the chicken and the egg - which comes first? If inflammation is the body's response to a torn tendon, then naturally anti-inflammatories would appear to be effective. That effectiveness wouldn't necessarily determine that inflammation was the cause and not the effect of a damaged tendon. The worrying aspect of the prolotherapy article is that the use of anti-inflammatories may be counter-productive in terms of healing the damaged tendon.



I've never found blepharitis listed in the symptoms of SpA (or RA or AS for that matter). Sorry if I've got that wrong - maybe you are aware of literature that lists blepharitis that I haven't read. I think I mentioned in another post that I searched for a link between blepharitis and inflammatory arthritis because my brother had blepharitis but I wasn't able to find that evidence.

Mouth sores, gastritis and skin rashes are symptoms of many diseases. For example, selecting mouth sores, gastritis and skin rash together in WebMD symptom checker produces the following list:

Actinic keratosis
Contact dermatitis
Lice
Coxsackie virus infection
Blepharitis
Canker sores
Chicken pox
Erythema migrans
Esophagitis
Folliculitis
Lyme disease
Mouth cancer
Pemphigus
Phlebitis
Pilonidal cyst
Pityriasis rosea
Poison ivy
Ringwork
Thermal burn (of mouth)
Ulcerative colitis

I'm not suggesting you have any of these - just illustrating that those three symptoms don't necessarily point to arthritis but can point to all kinds of diagnoses.



I'm sorry but I didn't remember that you had one of the genetic links (HLAB27 etc.) That's a clear pointer to AS and I can see then why the rheumy was willing to make a solid diagnosis despite the lack of imaging evidence.

will have to think more about this after the fact, healing thing. went out and did some googling, thus far the only sites i could find suggesting this were the sites promoting prolotherapy. did start to read some scientific journal articles on the clinical studies themselves, then things got less clear. but definitely will want to read more and think on it.

the thing that i've really noticed though is that the use of antiinflammatories like nsaids, cox2 inhibitors (before the edema kicks in and actually makes things worse), prednisone, cortisone injections into the SI is the prevention of the inflammation in the first place and thus the prevention of tendonitis, torn tendons or ligaments. that's what i've focussed on more. take an antiinflammatory, problems go away or at least are greatly minimized. so its the use of these drugs for preventative measures that i've focussed on more.

once i've done the damage, ice seems to be the best thing. not sure if it's its antiinflammatory properties or some other property, just stating observations here. and if things are really bad, then cortisone injection does seem to help things heal when they just won't on their own.



blepharitis. i was careful to say autoimmune and not AS or spondy. molly is the one that first pointed me toward seeing that inflammation of the tear ducts is associated with autoimmune diseases.

again, important to back up and look at the whole picture..........i think printing this list is really taking things very far out of context.



sorry for the confusion. no, not HLAB27, that's another reason for the doctor saying undiff spondy and not AS. while AS is >90% linked to HLAB27, undiff spondy is only 20-25%. however, some of the papers linked on here lately by me and others about other possible markers is intriguing, like the link to that one P450 deficiency, don't remember the exact one off the top of my head, but we talked about it here not too long ago.

no, what i meant was the fact that there is a hereditary link meaning my mother and her side of the family have similar symptoms, have been diagnosed through the years with "rheumatism", "inflammatory arthritis" and then people dying of stomach cancer and bleeding ulcers.

and found this last night, but no time to post yet:

http://www.ncbi.nlm.nih.gov/pubmed/2637670

and i have this too, the "crohn's like ulcers" in the ileum.

again, whole picture.................until one big smoking gun is found like for some of the other arthritises. i'm starting to think that undiff spondy may be the hardest of all to dx, but that may just be my egocentric perspective. we do tend to focus on the things that pertain most to us i think.

but back to the original topic. will need to think more about the original premise. does seem that preventing the inflammation prevents all the tendon and ligament and SI and rib problems in the first place. but once the damage is done, then do wonder what is best. will want to find sites not promoting prolotherapy saying the same things to be most convinced. think that's one of the main reasons i decided against the prolotherapy, couldn't find a nonpartial jury stating the same things as the prolotherapy sites. but too cost and distance did play into my decision. prolotherapy is not off the table, but definitely on the back burner.

thanks for good things to think about and research!