I went the the Rheumie on Thursday (first visit) and he gave me my official diagnosis of PsA. He said while I don't present with the typical signs (sausage fingers/toes or swollen red joints) my Achilles tendon, other tendons and sacroiliac joint issues coupled with an ESR sed rate of 40 are proof enough for him. He suspects, given my history, I may have had this for awhile. He wants to get x-rays of my pelvis to see how much damage there is and then will recommend which treatment he thinks I should be on. I went in with three year old x-rays of my spine that showed damage but I don't think they included the pelvic area. He thinks I am beyond the stage where a Sulfa drug will help and is leaning towards either Methotrexate or Biologics. I have to say while the diagnosis was not stunning, his planned course of action was. I told him I needed time to digest this all and research it. He asked me to give as much time to researching what the disease, left untreated, could do as I do to researching the side effects. That, combined with the similar warnings many of you have posted about not just treating symptoms but halting the progression has me convinced that I will get myself on something. I was just not expecting the big guns out of the gate.
However, I also plan on continuing to see my chiropractor the help with the symptoms and my friend who is an acupuncturist wants to give me some treatments too. This Rheumie made it perfectly clear he has no use for either of those professions. That being said, and given the fact that I see this as a long term relationship, I don't think he is the guy for me. I am going to get a second opinion from another doc that comes highly recommended who will hopefully be more open to pain management by alternative forms of meds.
Shame you want to slam your doc for telling you the truth. Damage will occur irregardless of how many needles are poked into you. Accupuncture treates pain not disease.
If a chiropractor will treat somone with spinal symptoms and a confirmed PsA diagnoses, he should lose his license and be prosecuted. He was tauhght in his first year that PsA along with other spondyloaropathies are accompanied by the formation of syndesmophytes. Spinal manipulation can cause permanent nerve damage (pain) if not paralyisis.
Not thinking your chiro or accupuncturidt have done a dang thing for you considering the amount of damage your rheumy has found. Damage prevention is goal one. The accupuncturist can be helpful with some management, BUT dump her in a second if she thinks she can treat the disease.
There is a huge difference between symptoms and disease process. I suggest yo ask your doc, the one who spent 12yearslearning how to treat this disease, to explain the difference. I frankly don't care if people paint themselves green, dance naked ubder a full moon, while licking frog slime to treat their symptoms, so long as they take their meds first.
Maybe I wasn’t clear. I get that I need to take the drugs to stop the progression and am willing to do so. (Thanks in part to what he said coupled with all your posts in here). Message received and comprehended. I am on board with that. He wasn’t ready to start anything until x-Ray results were done so it is not like I refused treatment in favor of alternative forms. I just would like someone who has more of an open mind when it comes to that for pain management. Not the treatment of the disease. He can totally drive the train on that. Maybe it was his snippy attitude that got me. As we were discussing my long history of maladies I said “I should have brought my records from my chiropractor. Do you know Dr. ----- ------?” His response was I make it a point NOT to know ant chiropractors. Took me back a few. Wasn’t very professional or necessary.
I can understand your feelings. My rheumatologist is excellent, however she is very matter of fact, my doctor is the same. My family (children, sisters and friends) are pushing me to try more natural means. When I talk to my doctors they both respond, nothing except the meds will help, if there was something that you could do diet wise we would let you know. I'm torn, afraid of the future and have issues with many things. However I also fear this disease and what it can do. I am currently on 25mg injections of MTX weekly...that wasn't working on its own so added 2000mg daily of Sulfasalazine. I am doing alright as far as tolerating the meds(it took a while) and if there are no improvements by the end of the month we will be looking at biologics. There is a really good book recommended on this site under book reviews. I bought it, read it and I've now loaned it to my GP to read. It really helped in understanding this disease and I'd highly recommend it. I am still playing with my diet along with my current meds and hope to be able to find something that will allow me to get back to a functioning life. This site has been a wealth of knowledge and the support has been wonderful. The journey of finding the right meds can take a while. Biologics are the best course of treatment...especially if you're already showing signs of damage. I wish you the best <3
Sunsetterdottie said:
Maybe I wasn't clear. I get that I need to take the drugs to stop the progression and am willing to do so. (Thanks in part to what he said coupled with all your posts in here). Message received and comprehended. I am on board with that. He wasn't ready to start anything until x-Ray results were done so it is not like I refused treatment in favor of alternative forms. I just would like someone who has more of an open mind when it comes to that for pain management. Not the treatment of the disease. He can totally drive the train on that. Maybe it was his snippy attitude that got me. As we were discussing my long history of maladies I said "I should have brought my records from my chiropractor. Do you know Dr. ----- ------?" His response was I make it a point NOT to know ant chiropractors. Took me back a few. Wasn't very professional or necessary.
Thanks TaraLynn. I downloaded the book this afternoon and have been alternating between reading that and browsing this site. It is all a bit overwhelming and a lot to digest but I totally get the severity of this and will comply.
Part of the reason for the delay is there are various forms of this disease which do overlap some. Axial vs peripheral disease requires different treatment. The DMARD Drugs are particullarly effective for peripheral stuff and often give pretty rapid results. The dovs prefer to get the DMARDs on board and functioning first as they really are the most difficult to get going because they have the most side effects. If he decides the axial stuff is the biggest concern he'll start there likley with the biologics.
You know, you may thing your Doc is an ass, thats fine. Keep in mind that Rheumatology is one of the poorest paying sub-specialties of internal medicine. There are no mediocre rheumys nor are there enough. They only go into the field because the science of autimmune system is absolutley fascinating. These guys are long on academics, and have the personality. There are the guys who actually care, but the rest are ther because they needed a job residencey is very competitive, fellowship more so. If he can help you, don't worry, about his personality. Frankly I thought he was rather kind rowards your chiro. There are even fewer good ones of those. A good one woild have had you to a rheumy a while back.
FWIW in terms of permanent damage, death etc NSAIDs lead the pack. That is if the prednisne doesn't get you first. Thank gosh we don't use Tylenol anymore, its worse yet. Don't think you are doing your body any favors by avoiding the "big guns" you aren't. I have to agree with Sybil, it is unusual finding a doc who wants to actually treat this dang thing instead of dance with it, you really don't care if he has the personality of bull calf in a squeeze chute being dehorned and castrated. You can always find a sympathetic chaplain.
Okay that visual made me laugh and I don’t even know what a squeeze chute is. Since he did not give me any advice yet on pain management and I am in pretty bad pain today (elbow and shoulder), what OTC do you all recommend? Hoping to get my answers and have a treatment plan in place within the next few weeks.
I about lost it when I read chiropractor and PsA in the same sentence. Please please please, stick with acupuncture. I second everything that lamb said in regard to PsA and chiro. It’s a huge, scary, dangerous no-no.
On the other hand, I love that he is giving you the opportunity to take the drugs that work the best for this disease. Try to see that a luck and discount the gruff attitude if you can. He really is doing the best thing for you. Let me put it this way: I know lots of surgeons who are really nice guys, but I wouldn’t let them operate on my dog. On the other hand, I’ve met some that are royal horse’s ends, but they are excellent at what they do. When push comes to shove, I’m going to one of those jerks who knows what he is doing. It’s really awesome to find a doc who is BOTH a great clinical mind and has an emotional capacity greater than a thimble. For now, I recommend sticking with one person to get you stable. Then shop around.
Just a heads up, not many rheums do much for pain management. The usual is finding the right NSAID that works of you, PT and exercise, and then topical treatments if you need them. Their focus is and will always be on getting the disease under control. When you achieve that, the pain gets better. If it gets too tough, go see your primary for other options.
It’s a bit of a shock to have a provider be so blunt. You will get a thicker skin as time goes on, and things like that won’t throw you off of your stride for even a moment. This whole thing does get better.
tntlamb said:
Shame you want to slam your doc for telling you the truth. Damage will occur irregardless of how many needles are poked into you. Accupuncture treates pain not disease.
If a chiropractor will treat somone with spinal symptoms and a confirmed PsA diagnoses, he should lose his license and be prosecuted. He was tauhght in his first year that PsA along with other spondyloaropathies are accompanied by the formation of syndesmophytes. Spinal manipulation can cause permanent nerve damage (pain) if not paralyisis.
Not thinking your chiro or accupuncturidt have done a dang thing for you considering the amount of damage your rheumy has found. Damage prevention is goal one. The accupuncturist can be helpful with some management, BUT dump her in a second if she thinks she can treat the disease.
There is a huge difference between symptoms and disease process. I suggest yo ask your doc, the one who spent 12yearslearning how to treat this disease, to explain the difference. I frankly don’t care if people paint themselves green, dance naked ubder a full moon, while licking frog slime to treat their symptoms, so long as they take their meds first.
Thank you. I knew what you meant. I am pretty sure I have beat the point to death that I am going to do the drugs for treatment. The rest was just about pain management. I appreciate all the info about the negative impact if chiropractic from everyone. Luckily my chiro stopped manipulating my spine years ago and I go to him to be stretched, receive heat therapy and a gentle massage. Really more PT type treatment. Again, thanks everyone for the input as I navigate my way to find the right solution and team for me. I am blessed to live a 40 minute bus or train ride from NYC and an hour car ride from Philly so my choices on health care professionals are thankfully less limited then other parts of the country. Shame on me for rushing into my first visit and first choice soley based on my insurance website and how close the doc was to my home and not based on reviews or referrals. Unfortunately, I waited until after the fact to ask for reviews on the doc and it has not been promising. Therefore, I have an appointment next week with someone who not only comes highly recommended but is considered one of the top 10 in NJ. I was honestly afraid to post this on here because of the initial reaction I got from saying I wanted to go to someone else. But as my primary physician said, chose wisely as you will be tied to this doctor for the rest of your life.
Many of these people have spent YEARS trying to get acknowledgement of their disease let alone treatment. You hit the jackpot. I think we just wanted you to know it,
Thanks you tntlamb. I truly appreciate all the assistance as I begin this journey (or maybe I should say as the journey I have apparently been on for some time finally comes to light). It honestly was only a year ago when I learned that my mild skin condition of psoriasis was actually an auto immune disease. I met a women on vacation last September that was on disability from it and she enlightened me. I will never forget it. We were all in the pool and she was going through all her symptoms. My husband and I were looking at each other stunned because many of the things she described were things I had. I came home and started reading up on it. Still sort of in denial. Then came the Achilles Tendonitis flare up for no apprent reason and both the podiatrist and physical therapist telling me that since I could not pinpoint the cause of the injury there was obviously an underlying cause. More confirmation to my suspicions. Then came an appointment with my GP to discuss it and the blood work with the elevated sed rate and here I am. An informative year to say the least so again…thanks to all of you for sharing what I assume to be years of knowledge.
Hahahaaaaaaaaaaaaaaaaaaa. I needed that ! tntlamb said:
FWIW in terms of permanent damage, death etc NSAIDs lead the pack. That is if the prednisne doesn't get you first. Thank gosh we don't use Tylenol anymore, its worse yet. Don't think you are doing your body any favors by avoiding the "big guns" you aren't. I have to agree with Sybil, it is unusual finding a doc who wants to actually treat this dang thing instead of dance with it, you really don't care if he has the personality of bull calf in a squeeze chute being dehorned and castrated. You can always find a sympathetic chaplain.
my rheumy is not a fan of acupuncture or chiropractor. At one time before the diagnosis I did prolotherapy. It helped my si joint but was expensive. Thhet
Here is the update. I LOVE the new Rheumy. What a difference! He spent an hour with me and was very thorough as opposed to 10 minutes I got from the last one. When I handed him a radiology report he pulled up the films and went over them with me (as opposed to glancing at it and tossing it aside). When he asked what was bothering me that day and I replied that my Achilles Tendon was giving me trouble, he pulled over an ultrasound machine and showed me the inflammation. I have a combination of issues. Severe Degenerative Disc Disease in the mid back to which he found it necessary to say severe twice and look at me over his glasses for emphasis. Osteoarthritis I n the neck and my knees. Psoriatic Arthritis in my SI joints, hand, and ankle/foot. The radiating pain in my shoulder/arm is due to the osteoarthritis in my neck. So I am an interesting case. Although it is present, the majority of my issues are other types of arthritis that will not necessarily respond to treatment.
That being said, I will be going on Methotrexate starting next month to ward off any further issues. I was supposed to start it this month but first had the stomach virus and then a sinus infection so I didn’t begin. I go back to him on Friday to review my latest blood work (just got back from that) and the newest radiology report from the x- rays he ordered. We are flying the beginning of February and since I haven’t started yet, I want to wait until I return to start since I generally catch something from the plane without being immune suppressant.
He recommended PT for my back issues which I have started. I have a routine of stretching that I do. I also have started taking fish oil and Vitamin D to go along with my regular multi vitamin. I have been incorporating more foods with anti-inflammatory benefits into my diet and have a green smoothie for dinner at least 3 nights a week. In the process, I have lost about 6 lbs. which is a start as I would like to take about 30 lbs. off to ease the pressure on my joints.
