Need help understanding longterm affects of PSA inflammation

General
#1

Help!! As a newbie, I am floundering to understand the long-term consequences of the disease in regards to joint damage. I have been to several doctors and all I ever hear is “take this pill and you will feel better.” There has been a lot of discussion here about the need to take medications to slow down the joint destruction, but I don’t really understand what that destruction is. How exactly does the disease affect the joints and eventually “destroy” them?

I am taking Sulfasalazine and it was helping the pain and inflammation but it has stopped working. My doctor wants to try MTX. I am nervous about taking it for many reasons. I would love to have a better understanding of why exactly I need to take it. What exactly will happen to my joints if I don’t take it? I have asked my doctor but I get general statements like “it will slow down the joint destruction.” I get the brush off if I ask for more in depth information.

I have tendonitis in most of my joints on the right side of my body, but I really don’t understand why having tendonitis is going to destroy my joint. It is my tendon that is inflamed not my bone. I haven’t really found anything on the internet that explains what is going to happen to my joints. Can anyone please explain to me how exactly this disease destroys my joint. Is my bone going to erode away? Is it going to continue growing and eventually fuse? Will I develop bone spurs? Why do I have pain in my tendons if my joint is the real problem or is vice versa?

My dad suffered from PsA for years and I saw him try every medication that has been mentioned here on this site. But, he still suffered and he died very young from complications from all the medications he was taking. I would really like to understand exactly what I am facing before I go down that road.

Thanks for any help, information or insight you can give!!

#2

I would love to know this as well. I have pain but, right now it's the beginning and I want to go as long as I can without the pain meds but, the more I read on this website the more I see that people are pushing the meds because they said we have to catch it early and stop the inflammation. So I am open to hear what everyone has to say and I want to know more. I want to know why and exactly what is happening to our bodies. I have even had a doctor tell me he didn't want me to get on Cyclosporin or MTX because it can damage my liver and many other side effects and he just gave me steroid creams for my skin. I was on steroid creams for almost 22 years without a single doctor warning me of the dangers. I did tons of research and found out my Adrenal Glands might stop working because they produce the same hormones that steroid creams have and my body might have gotten used to the steroid creams. That really freaked me out but, I am ok and I quit using them in July 2012. I also had a car accident and had a lot of inflammation after it. I went through physical therapy for 2 months and I am doing great now. It's been over a year since the accident. I do believe things have gotten worse since that happened though. I have been dealing with pain since 2006. I even got Gastritis in 2010 because my doctors kept upping my dosage of NSAIDS. I can't even take an Ibuprophen now without pain.

#3

This is a great topic. I just came back from seeing a Rheumy at a university hospital. I am still confused. She recommended that I start methotrexate. When I voiced my fears about this drug she said to think about, She said, “you could wait 6 months if you wanted to”. I appreciated the feeling of it being my choice, and also wonder why I would take it at all if I can wait 6 months to decide. My last experience with nausea and stomach cramping with Sulfalazane (sp?) didn’t feel worth it,

This excerpt is from “Psoriatic arthritis: When to treat”

http://www.papaa.org/sites/default/files/when%20to%20treat%20final.pdf

"Some people with mild disease may need minimal or even no treatment at all and people with severe disease may need stronger and even combinations of treatments. Drug treatments prevent damage to joints but cannot repair those already damaged, so the earlier treatment is received the better for people with severe arthritis.Your specialist will assess your prognosis (how your arthritis may progress and how severely you will be affected) to identify if you may have a more severe form of psoriatic arthritis and so benefit from early treatment. This is not always obvious in the first year or two of the disease and since many individuals with psoriatic arthritis will only be mildly affected, simple and local treatment and the use of the safest drugs possible may be all that is recommended. "

It’s warm weather now, so i feel better and am getting more exercise. It dropped to 62 degrees the other day and every ne of my joints hurt. So 6 months from now I may be thinking,“give me the medicine!” However, I’ve read that it can take up to 3 months to relieve symptoms. So maybe I don’t want to wait until then.

I have never had a flare that caused immediate joint damage as some people seem to describe on this forum. I have been told that my disease is “mild”. I also read that if my SED rate is low (i.e., low inflammation) then the rate of joint damage would be low/slow.

I am not sure that I am one of those cases where immediate treatment is needed. When I asked my new Rhuemy if she could predict how my disease will progress, she basically said “No”. She suggests treatments based on symptoms how I am feeling.

Nothing about this disease seems to be straight forward or simple…

#4

The first thing you have to understand is that there are several different forms of PSA, along with the fact that everyone has different symptoms and reactions to medications. In a nutshell your immune system is so ramped up that it actually attacks your own joints. This causes massive inflammation and swelling that leads to disfigurement quite rapidly in some cases. Flares can hit like a ton of bricks where your symptoms increase tenfold. They can last a day, a month, or a year. Stress plays a major role in a flares severity, duration, and frequency. Your pain can also relocate. One day your knees can be killing you, the next day it’s your toes, the next your muscles all feel like they are about to explode out of your body. There’s also nail issues, exhaustion, nerve damage, dislocations and so on. I’m attaching pictures of my hands. As you can see my fingers are quite disfigured. This happened during a flare where the swelling was so bad that my fingers were twisting under the pressure. The slightest touch caused agony. The most important thing is that you do whatever you have to to keep inflammation down. Meds, diet, exercise, meditation ect help everyone differently, just be open and prepared to try anything. I’m so sorry to sound so negative but that’s the reality your looking at. I only hope that your case is mild and can be controlled. Always remember that we are here for you when you need us. You have to also understand that what works for one person may not work for you and vise versa. New medications are rolling out all the time so don’t give up hope.
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#5

Here’s a picture of my right hand, this damage was done during my last flare that lasted about two months.
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#6

The joint damage is caused by cortical bone reabsorption. Your tendons swelling and pain is caused by inflammation of the joints and by small bone spurs that form at the tendon insertion sites in the bone. Even if you don’t have pain or tenderness, that doesn’t necessarily mean that there is no joint damage occurring. That is how some people are able to live for years without proper treatment and then end up with major structural damage to the joints. The dmards and biologics are the only drugs known to help slow the progression of the disease by reducing the inflammatory response that causes our bodies to attack the joints and tendons. Unfortunately, there are no other known treatments for PsA. The current evidence based practice is early diagnosis and treatment with either a DMARD or a biologic, or (even better in some cases) a combination of these meds. Google images for “psoriatic arthritis” and you will be able to see numerous images of the types of damage caused by psoriatic arthritis.

Physical therapy and exercise are essential to retaining range of motion and strength. It can also be excellent for pain management. Keeping on top of ones overall health is key, so a healthy diet, minimizing stress, listening to your body, and managing any co-morbidities will help you keep on top of some of the health issues that are an increased risk for PsA patients.

Read as much as you can from good resources. The National Institutes of Health(health.nih.gov), The Arthritis Foundation, The Psoriasis Foundation, Federal Drug Administration (www.fda.gov), The Centers for Disease Control (www.cdc.gov), and American College of Rheumatology (rheumatology.org) are great online references and you can trust the content. There is a good book available on amazon.com (and other booksellers, I’m sure) that explains all of this really well. It’s called, “Psoriatic Arthritis: The Facts”. It is written so that the layperson can understand and is a great reference for those who are new to this disease. YOU are your best advocate, and the more you know the better off you will be.

Most people question taking the meds. They have scary side effects. But, the risk of having these happen are actually not as high as many assume, with the most common being more frequent infection. I feel like if I take care of myself and practice good hygiene that I won’t get sick. So far, this has been true for me for the last 4 years; I haven’t even had a cold. The risk is worth the benefit. Most days I am able to function. Without the drugs, I was unable to live my life or to do things that are important to me. I won’t go through that again , if I don’t have to.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3123965/

1 Like
#7

This is a good article also: Afraid of Drug Side Effects? Side effects can occur, but the risk also can be overestimated.

http://www.arthritistoday.org/arthritis-treatment/medications/side-effects/arthritis-medication-side-effects.php#

#8

I am new to this site and also new to the PsA diagnosis. I have some of the same questions that you do and hope that others who have been in our shoes will come forward to tell their tales.

#9

What an interesting question - and indeed, medicine is still trying to find the precise answer (though there are lots of approximate ones).

Will my bones erode away? That certainly happens to many people - around the edges of the joint the bones can erode away and make the joint very weak. This is more frequently seen in the peripheral joints (hands and toes - google “pencil in cup arthritis”).

Is it going to continually grow and fuse? Will I develop bone spurs? Again, this happens to many people, more often in the big joints (eg shoulder - my dad couldn’t lift his arm well enough to put on a shirt by the time he was 55 because the joint was semi-fused). In addition, the constant damage to the tendons frequently causes spurs (as the tendon tears away from the bone, the bone “grows” towards it to help heal).

For most people, the inflammation occurs not just in the tendons (which in and of itself can cause bone spurs), but also in the synovium (capsule of protective stuff surrounding the joint), and even in the bone itself. Try googling “bone lesions arthritis” and look at the nih articles, for some reading that will either put you to sleep or be rather alarming, depending on your perspective.

Many researchers actually approach inflammatory arthritis as a bone metabolism disorder - bone gets remodeled in our body, and in inflammatory arthritis something goes astray with the process, so it is dissolved from where it shouldn’t be (and in the case of PsA often redeposited where it shouldn’t go too).

And don’t forget your joints aren’t totally made of bone, they’ve got all this snazzy stuff like cartilage in them. The inflammation can cause deterioration as though you are 80 with osteoarthritis. Causing joint space narrowing and mis-alignment of the joints, which can result in the twisted fingers we talk about here.

Whether you need to take the meds or not is always your decision. No-one else can ever weigh the risks and rewards for you.

I have borrowed the motto of a much earlier member of this forum - “fear the disease, not the meds”. I have what I would describe as well controlled disease with MTX and Humira, and have never had a true flare (in my understanding of the word) in my left pointer finger DIP joint, but I still see it slowly but surely twisting. I’m 38, and have had PsA for less than two years.

Finally, Grumpy has suggested some great resources. It’s the rest of your life - get reading. If you want a lazy way to find a reliable article on something, put the search term into google followed by “NIH” which should bring up the majority of NIH articles on it. Good luck!

#10

Several have hit it very well. As you read the literature though you need to be careful. especially the NIH (I write a lot of it and do the numbers for medical studies) Almost always there will be a list of numbers as to how many times its been "quoted" its like the old game of telephone. One article could be the basis of 6 more which spawn 12 more and each of those dozens more yet and suddenly it appears to be well known fact when in fact its not. (infection with biologic drugs is an example. There two specific types, on the whole the infection biologics is the same or even lower than the general population.) Also "citations numbers" for online articles could be downloads to an academic source. That academic source could have even been students downloading for an assignment. (My students do several)

With the advent of the internet there is tons of information out there to read. with experience and enough exposure you will ferret out what I am about to tell you. (I realize some will think patronizing. that's fine, I teach physicians. We have 23 new residents coming in at the end of the month they hang every word and stroke my ego just fine so i don't need it here)

Academics first of all speak a different language (scientists in particular) from the first undergraduate degree forward nothing is ever written in passive voice. The reason is so that there can be no mistaking what is being said. When you read any of these articles they appear to be written with great authority, thats not necessarily true.

Scientists communicate through journal articles and papers. Its there way of sharing ideas. But instead of just putting it out there they normally attach it to some kind of study. This is where lay people can be easily mislead. That study isn't to prove their point its to validate their theory.(The submit their number for statistical analysis) Once its validated they share with others and then decide where to go with it. FWIW unless the number of subjects in that study exceed 57 it has only a 67% chance of being correct.

So just because you are reading an evidence based article that is peer reviewed (peer reviewed means they though it was worth publishing and the methodology was correct not that the "theory" is ) It doesn't mean its true

The second way they speak in regard to OUR disease is also confusing. There are as someone mentioned at least 5 forms of our disease. the most common form (about 40%) is just annoying - it really is Grandmas arthritis and doesn't cause permanent damage. The other forms are worse - much worse.

But here's the problem (and I'm taking off my scientist hat) The only way to know which form of PsA you have is to assess the damage. You can't do that until AFTER it happens. That has happen to a large number of us. I'm not sure OOPs I guess it wasn't "mild" after all cuts it. There is a ton of literature (and especially used by the younger Rheumys just coming out fellowship) supporting early and aggressive treatment for ALL PsA. At this point Seenie should talk about her mild PsA and her new joints (and there are others here as well.

Then there is the third problem. Lack of studies. Unless you have an MRI with STIR sequences and done with contrast there is no way to eliminate the presence of inflammation in the entheses (and even the test isn't totally conclusive) We have a couple experts here in that field that I hope will jump in and expalain. Many rheumys determine the mild - severe rating based on either blood work (which is a laugh) or counting how many joints they "feel" inflammation in.

It is your disease and your life and you do need to stay on top but just keep the things I mentioned in mind especially the use of non passive voice in writing

#11

Hi, I know it's very confusing. Partly because the knowledge of the medical community is limited. They don't like to admit when they don't have answers. I have found that reading about PsA and the meds available will help to find the right questions to ask when you see the doc as well as help you understand the disease.

From what I have read here, so many people has different experiences and different things that seem to work for them. I think the adjustment is difficult, I'm still working on it myself. As well, the meds are scary but I have also found that I have to take something, there's really no choice. I was undiagnosed for a few years though I knew something was wrong. Due to this the damage set into one of my joints. It will never look or function the same again.

Give yourself time to absorb the information on PsA, as limited as it is.

#12

And a couple of really good points from Lamb regarding “filtering” the information - whether from the NIH or elsewhere. The articles are reliable, but that doesn’t mean the conclusions they come to are always right - different things in science (yes, for all those non-scientists, I do realise how absurd that sounds).

Use a couple of the tricks he mentioned (make sure there are a decent number of participants in the study - otherwise the conclusion could basically be considered wishful thinking).

Dini also has a very good point - give yourself some time. (I wanted to kill my Rheumy when he said that to me after it had taken 3 months to get an appointment and he didn’t want to give me any treatment because my disease is mild - when I say give yourself some time, I don’t mean it the way he said it to me).

What I mean is, it must have been awful to watch your dad die and know that it was probably complications from the meds. That you now have the same disease is a big one to deal with - and you need some time to devote to that as well - not just reading about osteoclasts and osteoblasts.

I saw my dad go undiagnosed and untreated for many years, and it turns out he refused treatment in later years when it was offered (I think he had given up by then). He died this year at 65 of a heart attack, which may or may not have been PsA related. By then he was so crippled there was an element of release.

I still have “survivors guilt” if you like that I got diagnosed early and got effective treatment, when he never got that chance. But some very wise people on here pointed out when I was just a newbie that I am a very different person, making my own decisions, and likely even with a very different disease. Even my mum pointed out that my approach to get diagnosed and treated was very different from dads, partly relating to the different outcome.

So remember to take some time for yourself to make sure you make the best decisions for YOU.

#13

Jen really whacked this nail on the head, as she is very much able to empathize with the OPs feelings.

This disease can be hard. That is the very simple, honest truth. When I was diagnosed, it took me months to take it all in. I got counseling to help me with the new feelings I was having, I found support through some very close friends on here and through Facebook, and my family and friends have been so wonderful to me.

“Give yourself time” is a great way to put it.

#14

I want to say THANK YOU to everyone who responded. The information you have given me is incredibly helpful. Much of the information I have read has been generic and I am a very fact oriented person. I can't thank you all enough for helping me to be able to wrap my mind around what it means when doctors refer to "joint damage." To me that is just so generic. I now have something concrete I can understand and I feel MUCH better about the need for medications.

I have two more questions....if you all don't mind!

1. Do the DMARDs and biologics help to protect against the co-mordities that have been linked with PsA? Most of what I have read does not address it. Just that PsA can contribute to the co-morbidities.

2. I had an MRI done on my shoulder 2 years ago that showed I have no cartilage left in the joint and I have 2 bone spurs. It is very painful and the bone spurs are shredding my rotator cuff and my mobility is becoming very limited. I do PT for it and it helps quite a bit but it still keeps me up at night. My rheumy insists that it is not due to my PsA, and therefore does not take it in to account with regards to my treatment. Does this sound right? I also have neck pain that makes it hard to fall asleep and wakes me at night. I am losing a lot of mobility in it, but again, my doc insists that is an issue separate from my PsA. Again, does this sound right?

I should preface the above by saying that I had a bad accident (I was hit by a city bus as a pedestrian walking in a cross walk) where in I was struck on my right side (the side with the shoulder issue) and was thrown through the air and landed on my left side. All of my joint issues are on my right side. Anyway, she says the issues in my shoulder and neck are from the accident not PsA. I had lots of pain after the accident (11 years ago) but after 2 years of physical therapy I was pretty much back to normal. Until 2 years ago. I have been steadily going downhill since. I, personally believe, that my shoulder and neck are from the PsA, not my accident or maybe a combination of the two.

I can say that my dad's right shoulder was "frozen" from PsA and he had terrible neck issues. But he also had Ankylosing Spondylitis. I am not sure if my issues are PsA related, from the accident (which I highly doubt) or from some other inflammatory arthritis like AS. I know they are very similar in symptoms. My dad had both.

Sometimes I feel like I am crazy and all the docs I have been too sort of make me feel the same way. Thank you again for all the help!!

#15

You are no crazier than the rest of us. I’m not sure if that’s reassuring or not!



Crabbygirl said:

I want to say THANK YOU to everyone who responded. The information you have given me is incredibly helpful. Much of the information I have read has been generic and I am a very fact oriented person. I can't thank you all enough for helping me to be able to wrap my mind around what it means when doctors refer to "joint damage." To me that is just so generic. I now have something concrete I can understand and I feel MUCH better about the need for medications.

I have two more questions....if you all don't mind!

1. Do the DMARDs and biologics help to protect against the co-mordities that have been linked with PsA? Most of what I have read does not address it. Just that PsA can contribute to the co-morbidities.

2. I had an MRI done on my shoulder 2 years ago that showed I have no cartilage left in the joint and I have 2 bone spurs. It is very painful and the bone spurs are shredding my rotator cuff and my mobility is becoming very limited. I do PT for it and it helps quite a bit but it still keeps me up at night. My rheumy insists that it is not due to my PsA, and therefore does not take it in to account with regards to my treatment. Does this sound right? I also have neck pain that makes it hard to fall asleep and wakes me at night. I am losing a lot of mobility in it, but again, my doc insists that is an issue separate from my PsA. Again, does this sound right?

I should preface the above by saying that I had a bad accident (I was hit by a city bus as a pedestrian walking in a cross walk) where in I was struck on my right side (the side with the shoulder issue) and was thrown through the air and landed on my left side. All of my joint issues are on my right side. Anyway, she says the issues in my shoulder and neck are from the accident not PsA. I had lots of pain after the accident (11 years ago) but after 2 years of physical therapy I was pretty much back to normal. Until 2 years ago. I have been steadily going downhill since. I, personally believe, that my shoulder and neck are from the PsA, not my accident or maybe a combination of the two.

I can say that my dad's right shoulder was "frozen" from PsA and he had terrible neck issues. But he also had Ankylosing Spondylitis. I am not sure if my issues are PsA related, from the accident (which I highly doubt) or from some other inflammatory arthritis like AS. I know they are very similar in symptoms. My dad had both.

Sometimes I feel like I am crazy and all the docs I have been too sort of make me feel the same way. Thank you again for all the help!!

#16

Thank you Jen! I do understand the guidance from Lamb and will keep his advice in mind as I read the studies and articles. GrumpyCat gave me a really great understanding of what happens when the "damage" happens. I have a lot of research under my belt in regards to the other autoimmune disease and complications I have, so I am familiar with the process, but it can still be absolutely confusing trying to read it all and understand exactly what they are saying. It does seem for every study pronouning one thing, there is another denouncing it! Yikes!!

The other reason I really need to wrap my mind around it all is that I have a lot of other health issues other than PsA and psoriasis (celiac disease, severe osteoporosis, blood clotting factor MTHFR (homozygous), history of TIAs and complicated migraines, dairy allergy, and several others). I have a very hard time finding medications I can take due to their gluten and/or dairy content. So I need to be sure that the medications are "safe" for me. There always seems to be one issue that complications treatment for another. Hence, my need for lots of research and a very clear understanding of what exactly it is I am dealing with.

Yes, it was hard to see my dad that way. He was diagnosed in his late 30s, using a cane by 45, in a scooter at 50 and he passed away in 2000 at 54 from kidney failure. He was taking close to 100 pills a week and 4 injections a week to "treat" his diseases. He had PsA, AS and gout. I recognize that there is so much more information now than back then, even though 13 years isn't that long.

My family...although supportive in helping me to cope physically, not so supportive when it comes to taking meds. But, that is why I am here. To gain another perspective from those that are in the trenches with it. So thank you, thank you!!

I just want to be able to make an educated and informed decision that I can feel good about. After reading everyone's replies, I am feeling better about the journey. So, again, thank you all so much for your information and support.

#17

As far as your first question, we don't know. The assumption is that it does protect against the other things. There was just a whole bunch of studies leading up to and following the Annual FDA conference regarding Ankylosing Spondylitis. AS by the way is one of the forms of PsA Perhaps the most exciting news that the biologics not only do treat the immediate problems but the long term data indicates they either stop or greatly slow the disease based on radiographic evidence. We always knew it but now its proven. Most of the co-morbid diseases are inflammation related. Control the information most likley they are controlled. But experience is different:

Uveitis is a good example of what we don't know. Its controlled well by Humira, not by Enbrel. It makes no sense. The only difference between the drugs is one uses actual Human DNA as the base and the other uses synthetic DNA as the base.

Axial and periperal pain. The biologics control the pain in the "trunk" and spine shoulder hips etc extremly well. MTX takes care of hands and feet (not so good with the rest) makes no sense

I understand your shoulder issue. Have no clue what it is to be honest and frankly it probably doesn't matter. My first Job in life was to jump out of airplanes and kill people. Undestandably some of them weren't willing to be killed and fought back causing some issues Landing hard out of air planes has caused some issues (knees) Having a scaffold collapse and breaking a few vertabrae has caused issues. I am CERTAIN the PsA hasn't helped those issues. However my Orthopedic surgeon and golg=f partner is the go to guy. Thats what he does or put another way he is the "Hard Tissue Guy" your Rheumy is the "soft tissue guy"

Given the experience many of us have had with our Rheumys its sometimes hard to believe they are among the BEST TRAINED docs out there They complete a 3 -4 year residency in Internal Medicine (or pediatrics) THEN an additional 3 year fellowship in Rheumatology and then another supervised practice or residency for another year or three. The theory is they are trained to take care of inflammation and then manage the rest of our care getting us to the right doctor for the right care. They are trained as primary care/diagnosticians first. then add a sub-specialty. They are supossed to know when we need a neurolgist, pain management specialist etc. If she is blowing off your shoulder, I'd be asking why. Getting the right care for it is critical. You can only do so much PT before you need the Rotor Rooter man. I frankly wouldn't care whether or not she thought it was PsA, it needs fixed.

It must be terrifying thinking of the possibiltites after watching your dad. Slow down and take a deep breath. You are about to hear a when I was young story. But its the truth When I was a kid the arthrits/AS combo was easily recognized. The Hunch back, the bamboo spine. etc etc. My Jr High Principal who was a champion AAU wrestler with my dad had it all. (It didn't stop him from swinging a mean paddle though) When I got my Dx that was all I could think of. The fact is I have gotten better. My baby sister (shes 12 years older than I ) took me to one of her nursing homes (She is a regional director of Nursing for a large chain - Incidently she has PsA/AS and uses a walker. She works full time but at 75 the halls are bit long) for the sole purpose of seeing there were NONE of those folks there any more and that was because of just the NSAIDS and for some of them the early DMARDS. I got the message quick. You think I'm mean, you ought to meet her. In any event we have a lot to hope for. (So long as we take our meds exercise everyday without fail, and stay healthy)

#18

As a newbie, to PsA, only 2months, I am totally overwhelmed. It has been beyond helpful to have found this site and to read from you, who have this disease. Thankyou all so much.

#19

Yes Thank you everyone for all the information! It's a lot to take in! I am going to see a Rheumatologist for the first time in September so I am definitely going to have to do more research about PsA!

#20

Thanks Lamb!! I agree I have to do something about my shoulder...just having trouble getting one of the docs to do something. My orthopedic refers me to the rheumatologist and the rheumatologist tells me to have the orthopedic look at it. Very frustrating. I will push harder for one of them to do something.