Hello, some of you may remember I started a thread a bit ago concerned about being DX in time to upgrade my health insurance for the new year. Well, my 1st appointment w/ a Reumatoligist was schedualed for mid dec, but I got a call early this morning saying they had a cancellation and I went late this afternoon. It took her all of 10 minutes to DX me with Psoriatic Arthritis. She found several lesions that I never really paid much attention to. But the "sausage toe" was the main reason for the DX. She said this condition is only present in a very few conditions. PsA being one of them. She went ahead and took blood work to check for RA but says she is 99.9% it is PsA. She said I was lucky it was PsA and not RA, but we will see. Just glad to get some answers!!You must be very relieved to have a DX. Now you can work on what will make you better! Best of luck to you!
Hi Ranger, so glad to hear you got your diagnosis so quickly. Just curious, did you decide to upgrade the insurance?
No. I explained my situation to her and she says treatment is pretty straightforward and shouldn't be too costly. She said if we decide to use Metheltrexate (sp..), there will be blood work done ever 4-8 weeks. 10% of that will only be a few dollars if I did have to pay, so that don't concern me much. I am a bit concerned about Metheltrexate and alchohol use however! I'm not a drunk by any means, but I am a beer fanatic of sorts. I love to buy and taste different styles of brew, and have several BBQ's during the summer where beer is a must. I can certainly cut my beer consumption down, but I will not stop. It's just something I enjoy far too much, and i am not willing to give it up. But, we will see what happens. We havn't really discussed treatment options yet. She's waiting till the blood work comes back first.Hurrah! I am very glad you were diagnosed so quickly. The first rheumatologist I was referred to for possible Behcets (suggested by the referring neurologist) refused to test me and said I needed a shrink as I was faking the pain for drugs. My husband was at this appointment, and it wasn't until two years later when I was again referred to a rheumatologist and picked up the first moron's records that we learned he refused to test me and told me see a shrink. My hubbie goes, I was there, he never said that. Then I was tested and diagnosed three weeks later on the followup. But he got 3 out of 4 of his diagnosisssss wrong, so I fired him for various reasons. It's a long boring story, but I am very glad you got help so fast. You are suppose to be on prescription folic acid for methotrexate, so be sure and ask about that. I had to stop after 18 months for skyrocketing liver tests. And I don't drink. Good luck!
So glad for you. Take care and Happy Thanksgiving.
Ranger- it's true about Methotrexate and no alcohol. Talk to your doctor about it. I don't know if there would be another suitable drug you can use. Methotrexate is working for me but I really miss the freedom of having a drink when I feel like it- not because a month's gone by and I feel like it's time to have an occassion!
I found one site that suggested that 5 pints of beer per week would be fine (poole hospital/UK). Thats around 7 beers. I can probably keep my beer consumption to 10 beers a week or less. I know most say NO alcohol period, but thats just not an option. I can certainly go most of week 5 or 6 days w/out a beer. But, on sundays when grilling out, or tailgating at the Bengals game, or playing poker, beer will be consumed!What's the website? I would really like to see what they have to say! I have looked everywhere and most say none or "occasionally" I found one that said 2 drinks a week and I was excited about that!
I tried to copy and paste but it wouldn't do it for some reason. I imagine you can go to Poole Hospitals web site and then do a search for MTX. I also found a site that recommended no more then 21 units per week!!! I'm moving to the UK!
Back when I was pregnant (about 10 years ago) the typical US advice for pregnant women was absolutely no alcohol during pregnancy; my British friends said the advice on their side of the pond was no more than one or two drinks per day during pregnancy.
I had an occasional glass of wine during each of my pregnancies, once we were past the first trimester.
Advice regarding alcohol and many medical conditions seems to vary with the times, location, doctor's preference, and who knows what else.
Also, I did mention my love for beer today to the doc, and she did not pass out. She said they are way over cautious about alcohol consumption because the potential side effect can be deadly. But, she also said that changes seen in the liver are usualy reversible if MTX is stopped. And she also said that damage to the liver from drinking on MTX is usually due to the liver having adverse reaction to the MTX. In other words, if the liver accepts MTX and is not compromised, then it will process alcohol normally and there should be no problems. But if the liver reacts negatively to the MTX, and you also consume alcohol, then the liver can be severely damaged. At least thats the way I understood it.True JR
But I found the website and the write up and I put it in my favorite places! Ranger what does 10 small spirits mean?
I believe in the UK spirits are just about anything other then wine or beer. Like whiskey, scotch, and so on would be spirits I think. Not positive though.hmmmm I wonder what small would mean? Maybe a shot?
Wanttobe....lolol, thats real straw clutching but I am excited too! Mr Rheumy has tod me my next port of call if the current mix of meds fades from being effective will be MTX. He delayed it as he knows I love my vino. hehehehe...well so far hehehe. If my liver has held out for 35 years of wine drinking then Im sure a wee bit of a toxic med wont harm it. We shall see.
[QUOTE=inflamedOnline]
So glad for you. Take care and Happy Thanksgiving.
Lisa
[/QUOTE]
We know youll have a happy one because you'll be stuffing your face more than you will the turkey. THIS PLACE ROCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I will be starting MTX when we return from vacation. My RD said 2 glasses of wine per week and I was happy with that.Ranger I don't know why she told you Pa isn't as bad as Ra Pa mimics the symptoms of Ra and can affect both your joints and soft tissue of your muscles. I am a Pa Sufferer besides an Ra sufferer, and it can get just as painful with Pa as it can get with Ra. I am glad she is getting you on meds right away but I would suggest watching it with the beer my rd does not want me drinking any alchol when I am on my meds due to the possibilty of elevated liver enzymes. Good luck and let us know how it goes with the meds. memeAllrighty...wanttobe and ranger...we know I love my martini's, but time and again the wisdom is 2 drinks a month. Is it really worth screwing with your liver? There are many non-alcoholic beers that I regularly drink, and then the occasional martini. Mix it up, it's just not worth it. MTX is working so well for me and I don't want to have to go on to a biologic because my liver levels come back screwy! I remember the pain all too well. I'm in remission, and I don't feel like screwing with it. Just think about it.Ranger..I realize that beer is a necessity to get through a Bengal's game these days...but I would suggest that you speak to your dr about your drinking habits before starting the MTX. She may want more frequent blood tests for you or may prescribe something else. Also I would make sure you get through at least your first set of liver function tests before adding the alchohol.
So you are a Bengal's fan...are you near the Cincinnai area. I live near that big amusement park north of town
Went back today and picked up my RX. I talked to the doc about drinking and she said "off the record" that one day of moderate drinking (6-8 beers) should be fine. She said to absolutely abstain from drinking for several days after I take the MTX and to drink plenty of water in between. And she said changes in the liver would be caught early enough to be reversable if the drinking did do something. She said we could switch to another med (sulpher something??) if changes in the liver occured. On that, she said I could drink all I wanted!!! LOL. And my RA test came back negative, which in her opinion was wonderful news. AWWW everyone is bursting my bubble LOL! We'll see how my trigliceride test comes back that I had today. I switched from oatmeal to cheerios- to try and bring the numbers down- there was really nothing else to do with the diet I eat- it's already good. I started exercising again...I swear if those numbers didn't go down from being very high risk heart attack - stroke I'm taking up smoking and drinking again and saying to h-ll with it all.
[QUOTE=meme]Ranger I don't know why she told you Pa isn't as bad as Ra Pa mimics the symptoms of Ra and can affect both your joints and soft tissue of your muscles. I am a Pa Sufferer besides an Ra sufferer, and it can get just as painful with Pa as it can get with Ra. I am glad she is getting you on meds right away but I would suggest watching it with the beer my rd does not want me drinking any alchol when I am on my meds due to the possibilty of elevated liver enzymes. Good luck and let us know how it goes with the meds. meme[/QUOTE]
Really?? Your PsA is as bad as your RA? That scares me a bit. The doc told me they was a HUGE difference between the two! She said PsA is much milder and has a far better prognosis! And virtually no chance of becoming disabled! Was she just easing my mind I wonder? I do have lots of anxiety about this whole thing and she knew that.
[QUOTE=buckeye]Ranger..I realize that beer is a necessity to get through a Bengal's game these days...but I would suggest that you speak to your dr about your drinking habits before starting the MTX. She may want more frequent blood tests for you or may prescribe something else. Also I would make sure you get through at least your first set of liver function tests before adding the alchohol.
So you are a Bengal's fan...are you near the Cincinnai area. I live near that big amusement park north of town
[/QUOTE]
I live just south of the big amusement park. Middletown to be exact. And yes, unfortunatly i'm a Bengals season ticket holder!! I did discuss my drinking habits w/ the doc. As a matter of fact, I told her stopping drinking was not an option. It's just not gonna happen. Plain and simple. I travel to beer tastings, tour micro-brewerys, member of several beer clubs, order beers from all over the world, and just generally love beer! She seemed to be unfazed and said I would be fine. I guess time will tell!
I was on MTX for more than 5 years and drank on a regular basis and then my liver started testing high. Luckily once the MTX was totally stopped it went back down. Thankfully I was also using Humira at the time and going without my MTX hasn't been nearly as bad as originally feared.
I will say that knowing what I know now I wish I had only drank when I really wanted it. I think I was pretty much in the habit of just automatically pouring a glass of wine the second I got home. It was like habit. Check the mail, walk the dog, pour a glass of wine. All before changing out of my work clothes. Truth be told I could have easily fixed a glass of tea which I got use to doing when I had to give it up. It was the dinners out with friends and sitting around with my husband that I missed it the most.
If I had it to do over again I'd just limit it to when I really wanted it and try to cut back. If I ever restart it again; which I'm putting off doing.....I'll just have maybe a couple a week verses a couple per night.
All in all this is good news for you Ranger. I'm glad to hear your doctor came to an answer quickly. SO many of our friends here spend years waiting on their doctor to just call it something!
Any chance you could post a picture of your skin that's affected? I've got a could spots that I've been watching but forgot to mention it to my doctor this last time. He always asks me if anythings going on with my skin and I forgot this week when I was there.
Hey neighbor!!!! we're about 20 miles apart
are you seeing a rheumatologist in Cincinnati or Dayton? who is she?
I love the Bengals too....as disfuntional as they are
[QUOTE=Ranger05][QUOTE=meme]Ranger I don't know why she told you Pa isn't as bad as Ra Pa mimics the symptoms of Ra and can affect both your joints and soft tissue of your muscles. I am a Pa Sufferer besides an Ra sufferer, and it can get just as painful with Pa as it can get with Ra. I am glad she is getting you on meds right away but I would suggest watching it with the beer my rd does not want me drinking any alchol when I am on my meds due to the possibilty of elevated liver enzymes. Good luck and let us know how it goes with the meds. meme[/QUOTE]
Really?? Your PsA is as bad as your RA? That scares me a bit. The doc told me they was a HUGE difference between the two! She said PsA is much milder and has a far better prognosis! And virtually no chance of becoming disabled! Was she just easing my mind I wonder? I do have lots of anxiety about this whole thing and she knew that.
[/QUOTE]
Hi Ranger, sorry you had to join the club but you will find advice here. I also have RA, PA and OA. For me PA has been more painful for a longer period of time than RA. It causes damage also. I'm not sure why your RD is happy that you have PA and not RA. My RD has told me that PA is more difficult to treat. It may be that it was more difficult to treat because I had RA. Not sure if he was making a general statement or not. I'm in RA clinical remission but PA is still active and at times very painful. I've had both for about 28 years. I had symptoms for fifteen years before I was diagnosed. I suggest you go to some of the psoriatic arthritis sites and gather as much information about the disease as you can. Also, check out the differences between PsA and RA.
I'm not going to give you any advice about drinking because I have a feeling that you've made a decision about that. Good luck and hopefully PA has been caught early and MXT will work wonders for you. Keep us posted. Lindy
Thanks for the reply. mmm, I don't know, everything i've read on the internet says PsA has a pretty good prognosis. Better than RA. My doc said PsA can be as painful as RA, but not near as damaging to the joints in the long run. We will see. Hey, Ranger05.
Did I read your post right? It said 6-8 beers EVERY day is considered moderate drinking. I guess I'm just a whimp, because that seems excessive to me.
I just have to say that I don't get the all or nothing about the alcohol. I will readily admit that one of the main reasons I started bawling the day I got my diagnosis was because of Methotrexate. I was already knowledgable about the drug before I went to the doc...thanks internet. I was worried about my hair, and yes adult beverages had a semi-important place in my life, especially during the holidays. We left the very next day to go home for xmas, and martini's at xmas are big in my family. But what are you going to do? Be logical. Have you had many bad flares? I have had the kind of pain that makes childbirth seem like a walk in the park! I don't want to go back. You can still have drinks, but seriously do your own research. It's like you latched on to the one and only study that told you what you want to hear. And I don't get your doc...ask your local pharmacist etc. Just be smart.
All that said...I get a martini this week! Yea![QUOTE=kweenb]Hey, Ranger05.
Did I read your post right? It said 6-8 beers EVERY day is considered moderate drinking. I guess I'm just a whimp, because that seems excessive to me.
[/QUOTE]
I said ONE day of drinking 6-8 beers! Not everyday.
about the alcohol....... first..I need to say I miss my red wine!!
I believe that the reason the alcohol consumption is so limited w/ MTX is because
IF you get a bad liver test while on the MTX and drinking.... you have to stop the MTX.. and it may be part of a cocktail that is working for you..
So..... as much as I love my red..and have an extensive collection of bottles collecting dust ..... I am not drinking as I would prefer... but only on very special occasions... so in 18 plus months... I've had four drinks.. two beers and two glasses of wine.. at four different times...
I am not happy about it.. but I won't compromise my "main cocktail" .... at least not right now
Just got back from Kroger Pharmacy. I asked the Pharmacist about drinking maybe 8 beers or so a week on MTX, and he literally laughed and said it would be perfectly fine. He said the same thing my doc said. Wait for a couple of days after I take the MTX to drink and drink plenty of water in between, and take folic acid. That said, I think I will pass on the MTX. The more I read the less I think it's worth the potential side effects. Also, he said it was usually prescribed to people w/ moderate to severe Psoriasis or PsA. My arthritis is what I would describe as mild as far as pain goes. If I never took a med again I could easily live w/ the amount of pain I have now. Everything that WAS hurting barley hurts now accept my feet. And they only hurt for the 1st few steps, then they are fine. And my Psoriasis was not even noticable to me. The DOC found one small spot about the size half dollar on one leg, and another spot on my other leg about the size of a nickle. And a spot on my back i can't even see. Maybe I should get a second opinion.Ranger....the pain isn't the enemy in this disease...its the damage causing inflammtion that is the problem. You may be able to deal with the pain but if left unchecked the inflmation will eat away at your joints and cause irreversible damage. The pain you suffer right now goes away in a few steps..bone on bone pain never goes away. Sit down with your dr and figure out a treatment plan you can work with.
who is your rheumatologist?
I keep reflecting back to when I injured my knee. The knee doc said my foot had lots of arthritis in them. BUT he said it was not inflammatory. At the time I didn't even know what that meant, so didn't give it much thought. And when my Ruematologist looked at the Xrays she seemed perplexed, and reluctant to make a DX. When she saw the Psoriasis it was like a light came on. And then we she saw my "sausage toe" and immediatly said PsA!
Ranger, you need a wake up call! The newest treatment protocol for PsA is to start DMARDS and biologics as early in the disease process as possible. One doesn't wait till they're crippled before they start the meds. The theory behind taking the meds is to stop damage from occuring. Damage will continue until you've achieved clinical remission. Damage consists of fused joints with little or no range of motion, back pain, foot pain that makes walking torture, tendon involvement which causes tendons to weaken and become floppy, achilles tendon rupture, and like RA, PsA causes complications to other organs. Like RA, there is no cure for PsA but you can control the damage by following standard medical protocol. You're probably in the early stages of PsA and MXT will be the only med you'll need to achieve clinical remission. There are several of us on the forum that have been searching for years for a combination of drugs that will stop the damage.
Denial put me in a wheelchair and almost killed me. It's taken 4 years and many combinations of meds for me to achieve clinical remission but I'm finally there. I have two elbows that will probably require surgery, an ankle that will definately require surgery in the next year or so, my right knee needs to be replaced this year and I have cardiac and pulmonary complications directly related to RA/PsA. Most of these complications could have been avoided if I hadn't been in denial for years and refused to take MXT and the biologics. Lindy
LinB2008-11-22 21:24:04Calm down LinB!! All I said is that I think I will get a second opinion. And as far as deciding not to take MXT, that is my decision to make. I was advised there are many other DMARDS or combinations of DMARDS that may work very well. Thanks for your concern. I'll admit that I don't know much about the treatment of PA but RA you have lots of options before having to take MTX. I went maybe 9 years before starting MTX; but I was on other DMARDS that entire time. I don't think you have to start MTX now.....but I do think you need to start something now. Certainly research your options. A second opinion is great; but I think you were lucky to have a doctor that so quickly came to an opinion about what's wrong with you. So many are not that lucky. It might be interesting to see what another doctor would say.
I'd still like to see a picture of what early PA looks like. Anyway you can post a couple pictures?
Ranger, calming down now
Lovie, there are pictures on the net showing PA deformities and inflammation but they're pictures of moderate to severe PA patients and not early onset PA. Lindy
LinB2008-11-23 09:42:25Ranger I'd be glad to recommend someone if you are interested in a 2nd opinion[QUOTE=LinB]Ranger, calming down now
Lovie, there are pictures on the net showing PA deformities and inflammation but they're pictures of moderate to severe PA patients and not early onset PA. Lindy
[/QUOTE]
Ha! Thanks LinB. I didn't mean to sound like a smart***. You are right, i am in a bit of denial I think! But I do believe I will get a second opinion though. And the more I read, I think I will try something else other than MTX. Actually, it seems to me docs are far to quick to describe such a powerful med when then are safer alternatives. Sulferazine (sp..) seems like the much safer option although it dosn't have the success % that MTX has. But, when it does work, it's very effective from what I read. It dosn't do as much for the actual Psoriasis itself, but like i said, my Psoriasis is basically non-exsistant. I found an article that says PsA can actully be harder to treat then RA, BUT RA needs to be treated much sooner then PsA. Joint damage occurs much faster in RA even though the pain may be worse PsA, it does not progress as fast as RA. Allowing more time to find the best treatments. Lovie, my Psoriasis would not take good pics. It's basically non-exsistant. The few spots I do have are all but gone now. I doubt they would even photograph.
Here's a pic of my biggest spot.
damn, didn't work. I will try to figure it out!Okay. Went for my 2nd opinion today, and recieved the same news. Psoriatic Arthritis. And I was prepared this time and asked some specific questions we've been talking back and forth about. So here's the answers I recieved.
Q1. Can I drink on MTX?
A1. In moderation. He said the NO booze on MTX theory was a bit overblown. He said changes in liver function can be corrected if they do indeed occur. Also stessed not to drink for several days after taking MTX.
Q2. Is PsA as bad as RA
A2. No. In his professional opinion, he says RA usually has a much worse prognosis. He said in some cases PsA can be as debilitating as RA, but only in rare cases. He says there are 5 different kinds of PsA and the majority of people have one of the mildest forms.
O, and i did ask about alternate treatment options other then MTX, and he said there were several. As a matter of fact, he said he MTX would not be his first choice of meds for mild to moderate PsA unless skin involvement was severe. He also said that since PsA generally don't damge joints as severly or as quick as RA, that controlling symptoms is more important that trying to alter the disease course for early mild PsA. He did say that severe PsA is very difficult to treat and often leads to more pain then RA.Every dr has their opinion on each form of arthritis, PA is one that many drs do not pick up on and unfortunately alot of us who have PA were misdiagnosed when the signs of PA were first showing and we ended up with alot more damage to our bodies than we should have had. I am one of those people, PA can affect your joints and it affects your soft tissue too. It is known for doing damage to the neck and spine. My hands have been badly affected by PA the soft tissue on them had swollen from the inflammation till the palm of my hands looked like I was holding a ball in each of my hands. Enbrel no longer works for me and nor does humira. I am doing well right now but I know that can change, my hands are much better and I am able to move better, but now we are trying to deal with the psoriasis which is now spreading like wild fire across my body. Ranger understand that it is important to keep ahead of the disease and if they are saying try the biologics etc to keep ahead of the PA think seriously about it and do your research you don't want end up in a wheelchair like some people I know who have PA. meme
meme2008-11-26 17:26:59Thanks meme. I should also note that the opinions of these docs were based on my particular case and not the cases of others w/ PsA. A more aggressive approach to treatment may very well benefit someone w/ a more severe form of PsA. My skin involvment is basically non-exsistant at this time. I have 2 dime size spots on my leg and a smaller spot on my back and thats it. And, according to both docs, my xrays show no signs of inflammatory disease, which in thier opinion was very good. I however don't understand what they mean because I thought PsA IS an inflammatory condition.
Hello all. Thought I would stop by and give you all an update. My second opinion ended up being VERY necessary after all!!!! No PsA or RA after all. I have (had) Reactive Arthritis caused by an infection when I injured my knee. What was previously DX as Psoriais was actually lesions caused by the infection. All is well now. My lesions are gone, and my pain is MUCH better. Thanks for all the advice, and I wish you all well. So glad you got to the bottom of your condition. I wish you the absolute best.
Copyright ArthritisInsight.com