Aspirin is one of the more potent NSAIDs with lots of side effects. In fact were it a "new drug" it would be prescription only. It was how my Grandfather (first licensed pharmacist in our state) treated his PsA. Felt Anacin would be the end of compounding Pharmacy. Worked great until his stomach fell out and his liver failed........ (He was 89 though) Undeterred, my mother used it too for hers. The problem for her was she kept answering the phone thinking it was ringing. Just because something is a common cause for symptom, doesn't mean its the cause for everybody.
There are a few random studies out there associating hearing loss and a few of these things with Autoimmune disorders. But as I have done 1000 times before will caution that association doesn't equal causation.
NOR do studies prove anything (most often they don't anyway) Most studies are simply the way scientists share opinions and ideas based on some observations (associations) they have made. Some are better observers than others. Thanks to the internet the bad observers (or even random) stuff never goes away. Its like evidence used in high school debate. You can say anything and find someone else who has also said it and has some level of expertese for saying it..........
Wait....so the reason I keep losing my balance and almost falling down might be related to my PsA? I just thought I was a clumsy oaf that was getting old. huh. who'da thunk it <scratches head>
Symptoms: Same as everyone, I guess. I posted pictures of the psoriasis outbreak and some of the inflammation. My left knee bursa is swollen badly. In fact, until I looked at the pictures, I had no idea my legs had gotten so bow-legged and malformed. I guess I try not to look at them. Out of sight, out of mind, right? Both wrists have recently begun to swell on the outer part. Hands and fingers are roughly 2-3x normal size. I was wearing a ring that is 2 sizes larger than my wedding ring, but had to take it off recently because it started to get too tight. Fingernails are ridged and pitted, and toenails are starting to lift from the nail bed and develop psoriasis plaques between the nailbed and nail (ICKY).
Fatigue, stiffness, fine motor skill difficulties. Serious brain fog (the other day I literally could not remember how to use a knife to quarter an onion...weirdest brain fog moment EVER for me). I sometimes have trouble trying to remember what word I meant to use in a sentence. When I type on here it takes a really long time because I have to read back through and find all the word substitution errors, spelling errors, and finger hiccups before I can post - I'm OCD that way :)
Both knees feel like shards of glass are rubbing together when I put any weight on my legs. Back spasms daily - sometimes severe. numbness, burning, and tingling from my mid to lower back spreading down the back of my legs, and also from my mid-upper back up through my neck. Cluster headaches (affectionately known as cluster&^%$ (word deleted) headaches). insomnia. depression. Icky gastrointestinal difficulties that improve when I'm on pred...so I'm guessing this is related.
There are more, but I can't think of them at the moment :)
âLikeâ
CA-Lynn said:
Patients would do well to remember that, as tntlamb wrote, âassociation doesnât equal causation.â
In any clinical trial or cache of patient histories, records are made of ALL patient complaints. Doesnât mean that one disease caused the other.
However, I do believe that within each interleukin cytokine cluster [e.g., IL-6], there may be a âfamilial relationshipâ stronger than what we currently know. By that I mean [e.g.] that RA and PsA are more closely tied than originally thought. Still, that doesnât mean that if you have one disease youâre a slam dunk for the other. Different gatekeepers.
The take away message is that thereâs so much more that we donât know yet.
We need a âlikeâ button. So much interesting thought happening in this thread! I would really like to âlikeâ individual posts.
1 Like
Back to the OP, it could just be that vertigo/ vestibular problems are really freaking common in all populations, and that there is no real relationship to PsA.
âOne recent large epidemiological study estimates that as many as 35% adults aged 40 years or older in the United Statesâapproximately 69 million Americansâhave experienced some form of vestibular dysfunction.1 According to the National Institute on Deafness and Other Communication Disorders (NIDCD), a further 4% (8 million) of American adults report a chronic problem with balance, while an additional 1.1% (2.4 million) report a chronic problem with dizziness alone.2 Eighty percent of people aged 65 years and older have experienced dizziness,3 and BPPV, the most common vestibular disorder, is the cause of approximately 50% of dizziness in older people.4 Overall, vertigo from a vestibular problem accounts for a third of all dizziness and vertigo symptoms reported to health care professionals.5 - See more at: http://vestibular.org/understanding-vestibular-disorder#sthash.PORbhV0I.dpufâ
I agree Grumpy...I've often just wanted to like a post :-)
GrumpyCat said:
We need a "like" button. So much interesting thought happening in this thread! I would really like to "like" individual posts.
We do tend to forget to look at the obvious for symptoms: med side effects. So many of the odd little things we experience are related to our medsâŚwe take enough of them! Itâs easier to blame the disease. If you start to look at the meds then thatâs a whole can-o-worms, trying to figure out which one it is, and then what to do about it.
I stick to the ones that are recommended by my doc: folic acid, vitamin d3 and calcium. I be them all by rx now too. I worry about the lack of oversight for vitamins and supplements. I hangs head did sink a ton of $ into supplements when I was first diagnosed. I needed some control; to do something to help me. I take it as an expensive lesson learned.
Lol! You guys crack me up. 
LOL Too funny!
In desperation, I tried the "gluten-free" diet. Waste of time, waste of money, no results. Then I tried some wonderful (and incredibly expensive) drink that is supposed to give you all the vitamins you could possibly every want/need and cure everything from insomnia to prostate cancer....another waste of money, no results. Then I tried giving up "nightshade" vegetables. That just made me sad (and oddly constipated). I love potatoes.
Where I used to live, there are more cuarendarias (basically witch doctors) than doctors per square mile and every one of them is just sure they know exactly what you need to be whole and well. Usually involving strange herbs that grow in the wilds of Mexico and I hesitate to even think about what else (eye of newt, anyone?). This is probably why my doctor was so very insistent that I take no supplements (not even a multi-vitamin), except for what he prescribed. Now that I am away from the Rio Grande Valley, I'm a little less stringent (and so it my doctor here). I take a multi vitamin, krill oil, and over the counter folic acid (in lieu of the prescription which is significantly more expensive than the over the counter variety).
My PsA doesn't seem to be getting better (in fact it is somewhat worse), but my heart is healthier, and I'm getting the calcium that my poor post menopausal body needs that I can't get from other sources because I'm lactose intolerant so I think its an even trade. But don't you know, every time someone selling the newest fad crap sees me walking down the street with my cane or walker and my scaly skin, they see "sucker" written on my forehead and try to sell me something purported to be perfect for what ails me.
<hangs head and blushes mightily>
Ooops. Wrong discussion thread for my symptoms...did I mention concentration issues? lol
tmbrwolf329 said:
Wait....so the reason I keep losing my balance and almost falling down might be related to my PsA? I just thought I was a clumsy oaf that was getting old. huh. who'da thunk it <scratches head>
Symptoms: Same as everyone, I guess. I posted pictures of the psoriasis outbreak and some of the inflammation. My left knee bursa is swollen badly. In fact, until I looked at the pictures, I had no idea my legs had gotten so bow-legged and malformed. I guess I try not to look at them. Out of sight, out of mind, right? Both wrists have recently begun to swell on the outer part. Hands and fingers are roughly 2-3x normal size. I was wearing a ring that is 2 sizes larger than my wedding ring, but had to take it off recently because it started to get too tight. Fingernails are ridged and pitted, and toenails are starting to lift from the nail bed and develop psoriasis plaques between the nailbed and nail (ICKY).
Fatigue, stiffness, fine motor skill difficulties. Serious brain fog (the other day I literally could not remember how to use a knife to quarter an onion...weirdest brain fog moment EVER for me). I sometimes have trouble trying to remember what word I meant to use in a sentence. When I type on here it takes a really long time because I have to read back through and find all the word substitution errors, spelling errors, and finger hiccups before I can post - I'm OCD that way :)
Both knees feel like shards of glass are rubbing together when I put any weight on my legs. Back spasms daily - sometimes severe. numbness, burning, and tingling from my mid to lower back spreading down the back of my legs, and also from my mid-upper back up through my neck. Cluster headaches (affectionately known as cluster&^%$ (word deleted) headaches). insomnia. depression. Icky gastrointestinal difficulties that improve when I'm on pred...so I'm guessing this is related.
There are more, but I can't think of them at the moment :)
Good discussion comes from good inspiration.....
Anyway back to the whole vestibular thing. I can remember a prof years ago telling is they called it Vestibular (after vestible) because it was an empty room. and merely the entrance to something spectacular. he said that wasn't true it wasn't a room but rather a shopping center (what we had before malls for you kids) he had spent his entire career deciding whether it was an entrance or an exit. In any event he described vertigo as a "draft" Although I'm begining to see it as "daft"
So without being specific at looking at possible connections with PsA after NSAIDS (I ignored the MTX discussion) there could be other relationships. The first I would look at is thyroid. There was some good work done back in the 90's: http://www.ncbi.nlm.nih.gov/pubmed/8884385 As anyone who has been around here a while knows, Thyroid problems are one of the common co-morbidities of PsA especially Hashimotos.
As interesting as the IL-6 discussion was. One needs to remember Interleukin are a group of cytokines (secreted proteins and signaling molecules) CAUSED by something to Cause something else (inflammation) To say that RA or PsA are the same because inhibiting IL-6 has good effect is just silly science. The next extension of that statement is to say that RA, PsA, and Cancer are the same because we also inhibit Interleukins with good effect in cancer treatment (in fact it was cancer research that turned rheumatology onto them.)
I say this because the production of inetrleukins not only causes inflammation in joint entheses, and organs, it can produce inflammation anywhere. One of the primary things that makes the whole auditory and balance thing work is those "hairs" Mammals BTW are the only creature that can't produce new hairs if the old hair get broken although I read somewhere they have some mice stimulated into producing new ones and eliminating hearing loss)
Before I hijack myself on a tangent. What I'm getting to is inflammation will cause every problem you are describing (along with time) Its just me but were I you, I would try some rather specific anti-iflammatories for that area. Talk with your doc but I can't imagine something like singular wouldn't help. Tylenol PM might too........
Also if nystagmus is involved, you might ask about trying some lomatrigine yeah Yeah I know its an anti convulsant. Be sure and get a blood level taken if you do. Birth control pills throw the whole mechanism into disarray.........
Sorry if teaching/sharing information offends. We have an emotional support section where that doesn't go on....
Oh yes, CA-Lynn. BPPV could be a possibility, and a good ENT has a clever little therapeutic trick for that which sometimes even works!
I just posted my Vestibular Dysfunction story on Blogs. Didnât want to hijack âŚ
I have Meniere's Disease and everything you have listed is exactly as mine. I'm losing the hearing in my left ear (Meniere's is usually only one ear but few have both). I, also, have PsA which I was on many different NSAIDS until I got anemia and had to go to the cancer center to get IV iron therapy treatments. My hematologist sent me to a rheumatologist as the NSAIDS caused my anemia. She first put me on Plaquenil which (I kid you not) made me grow horns all over my head. Secondly, she put me on Sulfasalazine which I developed 3 infections within my body at one time and had to discontinue. Humira came next which worked really well for 2 years and totally stopped working all at once. I couldn't walk or move my hands from the pain and stayed in bed for two days only to go to the bathroom and my feet and ankles hurt me so badly that I wasn't sure I was going to get there or not. At that time, she started me on a prednisone boost which go me up and moving again but, as we all know, prednisone is only prescribed for a short period of time, if necessary. I was then started on Enbrel which was working well until I started with UTI's and recurring (and I mean recurring) yeast infections. I went back to my primary and had a wonderful discussion with him. At the time I had anemia, he was going to put me on Celebrex after I had been on Feldene for over 12 years but wasn't really working that great anymore. My hematologist said he didn't want me on Celebrex and had sent me to the rheumatologist as I stated earlier in my post. Well, after all the infections, I asked my primary if we couldn't just start all over and put me on Celebrex as he had wanted to in the beginning as it would be easier to treat the anemia than it is to treat the recurring infections and he totally agreed with me and had me go home and call my rheumatologist. She, against her better judgement, prescribed the Celebrex for me and I'm doing beautifully on it. I'm running up and down basement steps which I hadn't been able to do that in years. I'm feeling human again! On the 21st of Nov (this last wk) I had an appointment with my hematologist and he now wants me to go on Methotrexate to keep the joints from further damage but I really do not want to go that route. I'm still having some problems with infections from the Enbrel, yet, but my liver enzymes are back to normal again for the first time in years. They were 55 and are now 33 and I feel terrific. I don't want to add MTX and now with the new insurance changes I'm only allowed to go on either Humira or Enbrel so the biologics are definitely out but that's OK with me as they were the culprits in all my infections. I didn't even know I had a UTI as I had no symptoms and the infection proceeded into my kidneys and then into my blood stream which sent me to the ER. The ER failed to read my urinalysis and sent me home after hydrating me and gave me pills to keep me from vomiting along with a Sprite to drink. We got 10 miles down the road and I got sick all over again but made my husband just take me home as we couldn't afford 2 trips in one night to the ER. The next morning, my husband took me to our primary and he wanted me admitted to the hospital but after they failed the read the urinalysis, I declined to go. He made me come back every day to his office for more injections (even on Saturday and Sunday) and he got me over it. Sometimes, we all have to take a look outside the box as we all know our bodies capabilities and I'm not going to take anymore meds than I have to anymore. I'm not as trusting as I was before and just took what they told me take without hesitation. I no longer am going to do that as I do have a say in what I put into my body. I'm not saying I'll never trust my MD's again but I'm taking a longer look before I agree to take what they tell me I should be taking. We all have to decide our own fate and help in the decision making process before downing or injecting drugs. I wish you all the best and good luck!!
I am fully aware of the ramifications of not taking any DMARDS or biologics. My brother died when he was 47 with severe PsA and MTX was his "wonder drug" even though he dealt with all the side effects that came with it including his hair thinned something awful from it. I'm a hairdresser and would give him hot oil cap treatments as he would have a scalp covered with thick skin that would come off like an old time frosting cap. He still lost mobility in both hands except one finger on each hand so I highly doubt that MTX will do me any favors and 2 of the biologics I've tried have ended up with infections which I'm still trying to control the last one. If 2 biologics have given me infections, my hematologist said that they will all react in the same way so biologics are out (even though my insurance company just informed me that they will now only accept Humira and Enbrel). We've had the same insurance for over 42 years with my husbands company and now they choose to eliminate all but the two I've already been on. Obamacare? Who knows? No one seems to have any answers to that question. I have no idea!
The DMards I have been on before were Plaquenil and Sulfasalazine to which I've had reactions to as well. Celebrex is working for me so I'll definitely stay with it. My liver enzymes are back to normal so I'm happy, happy, happy. Will it all last? Again, who knows?.
CA-Lynn said:
Gosh where to start?
Firstly, let me say that I believe that every patient has the right to choose her own treatment, regardless of whether or not it's a path down a slippery slope.
I am a huge advocate of MTX for this disease, having been on it for over 20 years. If I understand correctly, you're going to just take Celebrex and no DMARD or biologic. Well, I'm a huge fan of Celebrex, too, having been on that drug since it came out.
While your post presents a concise history of events, it isn't clear to me if you're aware that in autoimmune disease you need a DMARD or biologic to prevent further, irreversible destruction. So I'm going to assume that you didn't know that.
Some years ago I was working overseas and was there longer than anticipated. I ran out of my MTX. But I figured I'd be home within a month and maybe a month's breather off drugs would be a good thing. Plus it would let me know whether the drug was really working. Everything was wonderful......and then around the third week I went into serious rebound flare mode. Huge setback. A few weeks later I got home, got back on the drug, but it took me just about a whole year to recover the lost ground.
I can understand your reluctance to go on MTX but I'm wondering if you just have bi-weekly blood tests to check for infections, maybe that would be sufficient to put your mind at ease. At least then you'd have lab evidence as to whether or not an infection was brewing. And if one was, you could go off the MTX immediately.
Per CA-Lynn's post to me "it isn't clear to me if you're aware that in autoimmune disease you need a DMARD or biologic to prevent further, irreversible destruction. So I'm going to assume that you didn't know that" is assuming too much as I'm acutely aware of all the ramifications of this disease as I've had it for over 30 years. My brother died because of the damage done to his organs as MTX was the only available drug for him back then as he died in 1993 and he had to sign papers to allow him to continue with the MTX as no one wanted a law suit. I'm sure you're well versed on the subject but please don't assume that I'm not "aware" of dealing with this disease and what my options are. I'm relishing in the fact, at the moment, that I feel better than I have in years and I'm sure it won't always be that way because I've had flares that have put me in bed for days because I couldn't walk or even move fingers on both hands. Flares happen but I'd rather have a positive outlook rather than doom and gloom and assumptions put upon me. As I've stated, Celebrex is doing great for me and as long as that's the case, I will stick with it as I'm sick and tired of infections (never any fever) but too many infections to make me want to NOT go on a biologic or DMARD ever again!! I wish you nothing but the best Laura E D but not everyone has the money to get bi-weekly blood tests and the insurance companies are putting a halt to more than what we'll even know until one day we get a letter stating they are no longer covering yata, yata, yata as I have experinced in the last week. Hang in there and keep a positive attitude as it goes a very long way!! Good luck and Godspeed!
Laura E D said:
Congratulations! I am so happy that you have come out the other side of a long and tortuous battle with PsA -inflammation, infection, pain, fatigue- fighting. I hope that you enjoy the wonderful place that you have found and that you enjoy the here-and-now to the fullest!
I'm not quite there yet, still clawing and scratching my way out of a rather deep PsA sinkhole, but I can understand your reluctance to add anything into the mix which may disturb a rather delicate, hard-won balance.
Tena Marie said:I have Meniere's Disease and everything you have listed is exactly as mine.... She, against her better judgement, prescribed the Celebrex for me and I'm doing beautifully on it. I'm running up and down basement steps which I hadn't been able to do that in years. I'm feeling human again!
Then I sugguest you enjoy less hair and side effects all you want but, as I have stated, my pain is controlled and there are NO assurances that debilitation will NOT occur anyway as I've seen the debilitation for myself in my brother while on MTX.. And, yes, you're correct in saying to each his own! Enjoy your balding scalp and side effects, if that's your thing!! I'll continue to keep a positive attitude as I'm doing things I haven't been able to do in years!!! Good luck, CA-Lynn!
CA-Lynn said:
I'd rather have less hair and side effects than chronic, uncontrolled pain that debilitates me.
But to each, his own.
Alright enough already