Just Been diagnosed! Afraid of medications!

General
#1

Hello everyone!

I have just been diagnosed with psoriatic arthritis a couple of months ago. I have had pain and stiffness in my ankle, back for 2 years, but have increased lately. I had psoriasis 6 yrs ago but the lesions became very light, but the drs say that i still have psoriatic arthritis. My ESR and CRP are normal.

Anyway my dr started me on NSAIS Feldene, which is ok for symptoms but when i stop it they increase especially in my back.

At a phase the pain was so great and my dr advised me for Enbrel. Have u guys seen the official website first page! That seems to me like a poison not a drug! I can't take it. ANother dr advised me to start with MTX, Also afraid to take it.

What will happen if i don't take the drugs! is it just the pain or can my joints get damaged? i am trying to lead a healthier life but don't know if that will help. If it is the pain i will endure, but it's joint damage that will make me take the drugs if i have to. Thanks for ur help

#2

you will very likely, VERY likely, have damage and even deformities happen to joints if you do not take any sort of medication apart from the pain or inflammation medicine (NSAID’s). The drugs are scary, I am still scared of some of them but I would still recommend you start something. It doesnt have to be the biologics right away, and usually they dont give you those until you try something else first anyway. Just to let you know, I am on MTX and am feeling better and I have not had any problems with it.

#3

In terms of long term effects and nasty side effects the drugs we take in order of worst to best are:

1. Prednisone

2. NSAIDS (tylenol, motrin, ibuprofin, etc)

3. DMRD's (MTX, Sulfazine etc)

4. Biologics (Enbrel, Simponi, etc)

You need to read MORE than the lawyer written CYA info to be informed about drugs. I have a material safety data sheet (MSDS) written to exact OSHA standards including required protective equipment for a very nasty corrosive solvent call Di-Hydro Oxide. You would never want to use this stuff. In fact of survey of 500 adults 500 thought the substance should be banned - Its water. Aspirin were it to come to market today would be a class three controlled substance and available by prescription only.

If you don't take the drugs? Pain. If you can handle it, no problem but make sure you can BECAUSE that pain is actually your joints being slowly destroyed by inflammation. You will be able to cover it up for a while. You might even find a Pain Management doc to give you the good stuff. But One day he will tell you I can give you no more and the pain will unmanageable FOREVER because the damage is permanent. You will be able to have some surgeries to fix SOME of the joints, but they will be a living hell because you have taken pain meds for so long the pain meds can no longer be given in sufficient quantities to control the pain.

Now you have but one choice to get through the day and that is to take steroids on a daily basis in ever increasing quantities. (These are the same ones they give terminal cancer patients) First of all your adrenal system poops out so thyroid goes wacky and you blow up like a balloon, then your pancreas isn't getting enough direction and you get diabetes (we won't discuss what happens with diabetes - its too graphic) Finally you liver says enough.

Of course you could take the Enbrel and get that nasty itchy red spot for a few weeks.

I'm gonna repeat the Mantra of this Board- FEAR THE DISEASE NOT THE DRUGS

Everything that happened to anyone taking the "Drug" during the certification process MUST be listed as a side effect. That could include Hang Nails (listed for Lamisil) doesn't mean its related to the drug. Post approval studies are the ones that count. Several drugs in thiose studies have been withdrawn and others like the Biologics have been shown to be even safer than first thought.

I'd be happy to give you the real numbers and risk factors for any of the drugs if you ask (be specific). For example Cancer with Enbrel is 3 in 10 thousand (granted it likley will kill you if get it) but the lifetime risk for getting cancer for folks not taking Enbrel is 20 in 100.......http://www.cancer.org/Cancer/CancerBasics/lifetime-probability-of-developing-or-dying-from-cancer

#4

I can't honestly telly you what the FDA criteria for "warning" is....... The FDA had 48 reports (total) of related cancer post market. This would have been of MILLIONS of users over a number of years..... What it broke down to is apprxx a 1% greater chance of getting cancer Now that doesn't mean that if 9 out of a hundred people get cancer, now 10 of a hundred would get it. It means that 901 of 10,000 would get it.

That's statistically significant is worth being miserable????? That's your choice.

I will say this before I took Enbrel I prayed every night to not wake up in the morning. (I still OCCASIONALLY do) I don't mean to be melodramatic but for me dying from cancer even if nearly certain was preferable to living with the level of PsA I had.

MTX has a higher chance of cancer and requires regular liver testing and FWIW some real lifestyle (for some) changes..... There are more frequent reports of side effects while using.

#5

Sorry Lamb-Tylenol is not a non-steroidal anti-inflammatory drug. It is frequently taken by people on NSAID to help boost it's pain killing property, usually in early RA or PsA.

Islamaah- the psoriasis lesions can go into remission or not be visible but it still exists. My psoriasis frequently "disappears" but just as quickly reappears sometimes in another place frequently following an injury to the skin. The same is true of psoriatic arthritis it flares and then goes into remission. Injury, in the form of stress or a virus or food that person has to avoid, makes it flare again. The medications are designed to stop this "over reaction" of the skin, tendons and joints. Joint destruction is still happening even when there is virtually no pain.

#6

I too was afraid of POSSIBLE side effects. But to me the potential risks of going untreated were more scarey then the medication to control it. I do not want to live my life with my joints fusing up & unable to move. I am having it difficult enough now & find it hard to enjoy my grand kids or go places. I was diagnosed 3 years ago & my doctor is having a very difficult time getting it under control. I was recently diagnosed with pre-diabetes because my immune system is now attacking my pancreas & appears to be attacking my brain too. Possible side effects are just that.....POSSIBLE. What IS already happening is my immune system is attacking my own body......Once I put all that in perspective, I realized I had to give the medicine a try. Let us know what you deceide & please keep us posted.

#7

No need to apologize, its a mistake I have made before an probably will again. I missed recipe on a spelling test 50 years ago and still misspell it half the time (and in a way spell check doesn't off the "correct spelling" I also call my my number 5 son Aaron most of the time (his name is Moses)

michael in vermont said:

Sorry Lamb-Tylenol is not a non-steroidal anti-inflammatory drug. It is frequently taken by people on NSAID to help boost it's pain killing property, usually in early RA or PsA.

Islamaah- the psoriasis lesions can go into remission or not be visible but it still exists. My psoriasis frequently "disappears" but just as quickly reappears sometimes in another place frequently following an injury to the skin. The same is true of psoriatic arthritis it flares and then goes into remission. Injury, in the form of stress or a virus or food that person has to avoid, makes it flare again. The medications are designed to stop this "over reaction" of the skin, tendons and joints. Joint destruction is still happening even when there is virtually no pain.

#8

Lamb you are too funny! My son David, who is dyslexic taught me some of the tips they taught him back when he was in elementary school. I had trouble with friend and he told me, "Mom it is FRY-END!" It has always cleared it up for me. So I suggest "RE-SIPPI" to you to remember how to spell recipe in case your spell check is off! I have no suggestions for the Mosses/Aaron debacle; maybe adoption.......

#9

I'm afraid to take MTX. I don't like the side effect list, but I would take it if I needed it.

I'm not the at all afraid to take Enbrel, and it happens to work.

#10

Hey Islamaah, i just thought i would say hi. I'm a 27 year old guy and was just diagnosed last week. My Rheumatologist wants to start me on sulfasalazine, mtx, and them move me to a biologic as soon as he can. I have not started them yet but im worried just like you. So were are kinda in the same boat :)

tntlamb,

I wanted to say thank you for your posts above. Cancer was one of my biggest fears with the biologics as well. 3 in 10,000 i had no idea the risks were that low. that made me feel a ton better.

Thanks guys

#11

It’s all relative. Before getting an autoimmune disease, the strongest thing I’d ever taken was probably antibiotics. So when I read about MTX and biologics, I was SO stressed and sort of psycho-somatic’ed myself into having side effects from the MTX. Now I’m on a different scary drug (for a different autoimmune thing), and MTX seems like a sugar pill in comparison. I can’t wait to switch back :). So… Try the Enbrel or MTX. See how it goes. Stop if you need to. But don’t be ruled by fear and don’t let your joints be damaged.

(and omg the turmeric, supplements and natural “treatments” are SO ridiculously expensive compared to modern medicine, at least if you are fortunate enough to have insurance coverage. If not, the price is comparable)