Thank you, mimiB, I need all the encouragement I can get. My daughter who works in a dermatology clinic has told me over and over not to be so afraid of the biologics. But, for someone who never boarded an airplane until she was 59--I am the biggest chicken and always proceed with more caution than most people. Just talking online to people who are having the same problems is such good therapy (and it spares my adult kids alot of complaining). Actually, I have an appointment with my daughter's dermatologist in June....she will most likely start me off with prednisone, although she has already warned it won't help the psoriasis and could make it worse! So, until then, I'm going to do the diet which "Paula" commented on "diet" discussion. I feel very lucky when I read your and others' experiences with the arthritis. I've had back therapies 3 different times in the past 3 years, and my back MRI shows a lot of deterioration and spondylitis (sp), but right now my back is doing fine. I had horrible neuropathy in my feet for a couple of years. It was like walking on a bed of hot coals with spikes in them and also causing my feet bones to feel like they were going to break. My I.M. doc put me on a small (10 mg) dose of Nortriptyline and over several months time, the neuropathy subsided. I have it occasionally now, but not so horrific. My feet bones are sore, but not unbearable. My hands always hurt and there is noticeable swelling in my fingers, etc., and all the other symptoms, weakness, fatigue, aches all over, bla bla bla!! We certainly all can agree--this is not fun and not how I expected to feel at 60!!! But, no surgeries or injections yet! I LOVE YOUR MOTTO! I will try to keep it in mind to keep my spirits up! I should be thankful my arthritis didn't get bad until a few years ago--I see lots of people on here who are very young and having to deal with this crap! Thanks again for responding and I hope I can be of help to you, too!
mimiB said:
grandma J, I take it orally and also get the occasional 80 mg kenalog injection into my knee.
Steroids may be appropriate for "bridge therapy" or "stopgap" treatment until an effective DMARD or Biologic or combo is found and for extreme flares. Every patient is different and may respond to therapies with varying degrees of success depending on where they are in the disease process and their unique symptoms.
To me, the disease is scary and so are the meds. I know you have heard "fear the disease, not the meds" but frankly, both of them are scary to me. At some point, we have to face our fears of the disease AND the drugs and choose to fight. If we choose fear and passivity, the disease will win. In the beginning, I had the tendency to catastrophize and I think I was dealing with a pretty whopping dose of depression. Now, my motto is "strategize, don't catastrophize!" That means to become a warrior against this enemy and pull out every weapon of mass destruction I can wage in the fight.
For me, prednisone is an effective weapon in my arsenal, I have taken as little as 2.5 mg and as much as 30 mg per day, depending on what is going on. I simply cannot function without it right now. I would be bed ridden or wheelchair bound.
As it is, I am currently on 10mg of daily prednisone, and I can function pretty well, including a fairly intense cardio workout 3 times a week.
My goal is to get off of prednisone, completely, once I find a biologic that works. I have tried three and have not had success with any of them. I do take methotrexate, but it does not adequately manage my symptoms. My right knee has gone from normal to "bone on bone" in the last year and a half. My ankles and feet have major issues. I have had a lumbar fusion and now my cervical vertebrae are in similar shape. This stuff is nothing to mess with, so please fight it with everything you have.
Thanks, sybil, I'm reading the discussions and hoping that what I read convinces me it's okay to take the meds. The reason prednisone doesn't scare me is because my mom has been on a small dose for a long time and she's doing great. I've also had prednisone a few times, and it was amazing how good it made me feel--pretty close to euphoric! When I think about it, my mom, for being 89, has a great attitude and even though she has bad arthritis in her hands and her back, she sews doll clothes and whatever else anyone will ask her to sew. Plus, she never sits still--she still drives and has to be on the go a lot!!! People can't believe she's 89!!! I am concerned that prednisone will make my psoriasis get worse, and on top of that, I'll have to avoid tanning....anyway, thanks for responding--I need as much advice and support as I can get!!!!!
sybil said:
Grandma J, I'd strongly, double-strongly, recommend looking at discussions on here about DMARDs (e.g. Methotrexate), Biologics and Prednisone. It's great that your mom is doing so well but possible that she's unusual, there are good reasons why your doc advises against steroids and in fact I've never known anyone recommend long-term steroids. It seems people only take them long-term if nothing else is suitable. The DMARDs and the Biologics however are not all that scary at all, really. But you need to check it out and make up your own mind.
Grandma J said:
The pain of arthritis is really getting to me. It seems to be getting worse rapidly, and it is scary. I know it's not recommended, but I go tanning occasionally to help clear up my skin somewhat. I don't feel that anything I'm doing for the arthritis pain is working--however, I'm not doing much. I'm terrified of all the strong drugs--the biologics especially! I take a few aspirins and tylenol, but they're really worthless. I'm trying to find time to read the discussions on this site.....I think knowing how biologics are working for others will help me make a decision about trying them. First, though, I'm planning on changing my diet to avoid certain foods and increase certain other foods to see if that helps. I'm surprised your doctor gives you prednisone. I have BEGGED for it--my 89-yr-old mom has been on a small dose of prednisone for about 12 years for her polymialgia and she is the healthiest 89-yr old I've ever known! My doc tells me it will hurt me more than help! I have not heard of Simponi Aria, but I'll look into it.....do you get prednisone shots at the pain site or do you take tablets? I wonder if there are others who get prednisone on a long-term basis?
So your mom survived well the most dangerous drug we take, the one with the most side effects the most often and the one with the most deadly irreversable side effects thats good. All of the drugs are much safer than the internet or legal boilerplate make them sound. People love predi because even when it does nothing it makes the feel better. None of them would be available if the benefits did not exceed the risk, well except pot.
http://www.arthritistreatmentcenter.com Is there such a thing as a safe dose of prednisone? What is a safe dose for patients with rheumatoid arthritis? A spirited debate was published in the Rheumatologist, a magazine I get. The topic was the use of prednisone in rheumatoid arthritis. Recent guidelines produced by the American College of Rheumatology regarding treatment of rheumatoid arthritis omitted the use of prednisone. Dr. John Kirwan, a professor at the University of Bristol, who wrote several papers showing that prednisone had disease-modifying effects and held back the destructive processes of rheumatoid arthritis (RA) made his pitch. He advocated the use of prednisone in combination therapy for this condition. Dr. Theodore Pincus, a professor at NYU, advocated the use of low dose prednisone (less than or equal to 5 mgs a day). He provided evidence that it was safe and effective at that dose. Dr. Anthony S. Russell, a professor at the University of Alberta issued the counterpoint. He provided historical data showing that prednisone had long term toxicity without significant benefit (in his opinion.) With all due respect to Dr. Russell, much of the data he cited was old data when higher doses of prednisone were used. He also contended that primary care doctors would be tempted to use prednisone if they saw rheumatologists using it. My opinion is this. I use low dose prednisone a lot in my practice. By low dose, I mean 5 mgs or less. I think it is effective as an add- on therapy. It is also a great "bridge" if the patient is transitioning therapies. I have seen very little long term toxicity associated with this low dose approach. And I think the benefits derived from improved activities of daily living far outweigh the negatives. I do think that doses higher than 5 mgs should be avoided if possible. I also don't think the primary care issue is that big a deal although I admit... I have seen some indiscriminate use in my community.
There is only a debate when there is a lack of prima facie evidence or people look deeper into the evidence. The choice to use or not use a particular therapy when several options of therapy are available is not an endorsement. None of the options would be available were there not a larger body of evidence determining that the benefit/risk is acceptable. When a group of professionals have a debate about a therapy that is NOT on label (meaning that it has not been studied in large population studies and considered standard theapy) one should be alert. When they use the words "I Think" one should be alert. That is not saying the approach is wrong or should not be used. But that also doesn't mean that in terms of relative risk the risk factors change (BTW I know both Pinkus' and Russell's work there is no question Russell is the better scientist)
Now if we want to talk "fear" that changes everything. There are reasonable and unreasonable fears. My bride is a perfect example. When she was teaching at a small town school to support one of my frequent forays in grad school she had "duty" one night at a school dance. A Senior attempted to enter the Dance unfortunately he had been drinking (this was the 70's) This wasn't any senior he was a 250# defensive end who was sorting his Division I scholarship offers. His folks were the town "wheels" What the didn't own hey were buying..... He shoved my wife aside and said he was going in anyway. She chose not to be "assaulted" and sadly cold cocked him. He went out like a light. Now that was a reaction...
Fear was a week latter when Dad and a legion of attorneys showed up at the school board meeting demanding action. She looked Dad square in the eye and told him the only action that should be taken should be with a belt in the barn for him being so stupid as to risk his future over beer in the parking lot. She went on to tell him the best course of action after lighting the kids butt on fire was to keep everything as quiet as possible as she was reasonably certain That offers for defensive end with a glass jaw who had been cold cocked by 120# female teacher might thin out a bit if ever he lived down the humiliation.
This is the same woman who refuse to go into our spare bathroom for a week after I killed spider in it, because spiders travel in pairs and the dead spiders partner was laying for her. It was everything I could to keep from having to move to a motel when I suggested if the partner was really pissed, it might come looking for her......
Look we all make what is the best decision FOR US, that's fine that doesn't preclude folks who are in a support role with each other from keeping it real. What the disease does to that is not desirable and permanent is a dead certainty. What the meds do to us that is not desirable and permanent is single digits per thousands (or in the case of the Biologicals tens of thousands) Hammering over and over is encouraging to most.
We all have to make the best informed decisions for ourselves, with our physicians as our partners. This is the best course of action for me right now. I take it day by day.
Let's not underestimate our mental health and the toll that this disease can take. When I wake up on some mornings and seriously consider putting an end to my misery, then the benefits of low dose prednisone seem to outweigh the risks. That's just me keeping it real.
Thats exactly right Mimi. Just stay away from spiders (nothing has changed for my bride in 40 years) I have NEVER seen you in a better place. you in many many ways are a huge inspiration to us all.............
Awww, thanks for saying so, lamb ! Thanks to the support and information on this forum I feel so much better equipped to cope and fight. I do want to encourage everyone to keep fighting and take courage and don't give up hope !
Spiders I can handle, but ever since I tangled with a copperhead at the ripe old age of 7, I do have a snake phobia and I am terrified of monkeys....not sure exactly why.
Can’t remember, but I think it was on a thread started by Michael in Vermont about personal “down there” stuff. The bottom line was that my itchy, bleeding butt was poor hygiene. For crying out loud, and it was witnessed by a visiting med student.
I have to admit, it wasn’t funny at the time, but it is now.
Oh, the indignities ! You would think that after having given birth multiple times and having surgery to repair damage from mishandled births, and skin cancer that occurred (in a place that I can assure you has never seen the sunshine) that I would have no dignities left. However, I have made an appointment with yet a third dermatologist to search every square inch of my glorious nekkid body to find any speck of psoriasis or skin cancer that may be lurking.
I have already seen two other dermatologists and neither of them looked down there or back there, and neither of them would say that I had psoriasis on my nails, though both agreed that they were abnormal. One said I might have a fungus, but I think she was wrong, obviously, and she didn't prescribe any kind of treatment other than biotin caplets.
When I told the last dermatologist that my rheumatologist suspected that I might have psoriatic arthritis, she said "well you probably do, what else could it be? But I don't want to diagnose you with psoriasis without clear evidence because once it's on your medical record it is bad news " I looked at her like she had three heads, because her husband is a rheumatologist ( not mine) and I guess she ought to know that there are many other things it could be AND if I already have psoriatic arthropathy on my medical record, who gives a rats A** ! I didn't even want to pay her !
In addition to the indignities of this disease, we have to subject ourselves to some of the most bizzare, inhumane experiences. I do not suffer fools, LOL. I'm usually not this mean, but I'm on extra prednisone right now.
A while back I was at the dermatology clinic to have a latex sensitivity test done because of the latex in the needle covers of some of the biologics.
While I was sitting with the dermatologist and nurse waiting to see what if anything happened once they had me 'latexed up' (nothing, thankfully!), this lovely derm was asking me about my PsA. I mentioned to her that in spite of seeing two of her colleagues over the years no-one, until I saw a rheumatologist, had diagnosed any of my skin problems as psoriasis. Admittedly I had typical plaques on both knees at that point.
I showed her my right thumb nail (sorry folks it's had a chewing recently) which has got worse and worse over the years and had previously been suggested to be of fungal origin. Oddly the anti-fungal cream made no difference at all, wonder why that was???????
It is not typical pitting or onycholysis. Her view - likely psoriasis! Her explanation - it can cause different nail manifestations. Her reason - because psoriasis in the skin of the fingers and toes can damage the underlying nail bed. I've now got it starting up in my left thumb nail as well. A 'light-bulb' moment in my PsA journey.
My toe nails look ok at a quick glance but when I couldn't manage to cut them myself and had to go and see a chiropodist he said immediately that I had evidence of psoriatic changes in my toe nails, mainly thickening and a tendancy to split/flake.
So this tale leads me on to yet another 'light-bulb' moment in my PsA journey, just one of several thanks to all the open, honest, sharing and caring people on this forum. Itching, bleeding and general misery 'down and back there'. All my life! I'm 51 now. I did see my family doctor, eventually, many years ago. He didn't get the diagnosis right but he sure told me what to put on it that helps relieve the itching. I don't think that with my new knowledge on the subject I'm going to be mentioning it again specifically to the doctors. If they want to look at any of my itchy skin there is plenty more to choose from at the moment :( without having to subject me to a rectal examination.
So MimiB hang on in there. And like you, I don't 'get' (or give a rats a**) why having a psoriasis diagnosis on your med records is bad news.
Thank you for posting that photo. It cleared up another mystery for me. My nails aren't that extreme but are looking "odd". I had no idea why but thanks to you I now know what it is
Jules said:
A while back I was at the dermatology clinic to have a latex sensitivity test done because of the latex in the needle covers of some of the biologics.
While I was sitting with the dermatologist and nurse waiting to see what if anything happened once they had me 'latexed up' (nothing, thankfully!), this lovely derm was asking me about my PsA. I mentioned to her that in spite of seeing two of her colleagues over the years no-one, until I saw a rheumatologist, had diagnosed any of my skin problems as psoriasis. Admittedly I had typical plaques on both knees at that point.
I showed her my right thumb nail (sorry folks it's had a chewing recently) which has got worse and worse over the years and had previously been suggested to be of fungal origin. Oddly the anti-fungal cream made no difference at all, wonder why that was???????
It is not typical pitting or onycholysis. Her view - likely psoriasis! Her explanation - it can cause different nail manifestations. Her reason - because psoriasis in the skin of the fingers and toes can damage the underlying nail bed. I've now got it starting up in my left thumb nail as well. A 'light-bulb' moment in my PsA journey.
My toe nails look ok at a quick glance but when I couldn't manage to cut them myself and had to go and see a chiropodist he said immediately that I had evidence of psoriatic changes in my toe nails, mainly thickening and a tendancy to split/flake.
So this tale leads me on to yet another 'light-bulb' moment in my PsA journey, just one of several thanks to all the open, honest, sharing and caring people on this forum. Itching, bleeding and general misery 'down and back there'. All my life! I'm 51 now. I did see my family doctor, eventually, many years ago. He didn't get the diagnosis right but he sure told me what to put on it that helps relieve the itching. I don't think that with my new knowledge on the subject I'm going to be mentioning it again specifically to the doctors. If they want to look at any of my itchy skin there is plenty more to choose from at the moment :( without having to subject me to a rectal examination.
So MimiB hang on in there. And like you, I don't 'get' (or give a rats a**) why having a psoriasis diagnosis on your med records is bad news.
I begged my Internal Medicine doctor for just a low steady dose of prednisone after my Rheumy said no. I mentioned in another discussion that my 89 yr old mom is more active than 98% of ppl her age--no broken bones yet despite falling a few times and no bad lab results other than borderline low hgb and she's been taking prednisone for several years now for polymyalgia. She is currently on 3mg but has more pain these past few days and is going to ask her doctor to increase it. Over the years the dose has fluctuated between 3 and 20mg. We have the same internist but both she and my rheumy insist prednisone is NOT used EVER for PsA. So why are so many of you taking it? Anyway, my daughter who's a nurse for a really good Dermatologist (currently in her own practice but from Mao Clinic in Rochester) talked to this doctor all about me and now I have an appointment coming up with her. She has already said she will prescribe me some prednisone. I've taken short term, I think it's called "prednisone push" a few different times for different things. Last year being for my horrible back pain for which I was doing P.T. It got me over the hump and I remember telling my PT I felt so good "like I was walking on air!". When I told this to my internist, she said some ppl could experience euphoria from prednisone. It wasn't euphoria, though--I know the difference! It actually made me feel like I did when I was healthier several years ago. If it's called euphoria,then that's okay-it wasn't uncommon for me to say I was "high on life!". I'm so glad so many of you have had good results with prednisone, so I feel confident it will help me-at least until I make the decision to go ahead with a biologic.
http://www.arthritistreatmentcenter.com Is there such a thing as a safe dose of prednisone? What is a safe dose for patients with rheumatoid arthritis? A spirited debate was published in the Rheumatologist, a magazine I get. The topic was the use of prednisone in rheumatoid arthritis. Recent guidelines produced by the American College of Rheumatology regarding treatment of rheumatoid arthritis omitted the use of prednisone. Dr. John Kirwan, a professor at the University of Bristol, who wrote several papers showing that prednisone had disease-modifying effects and held back the destructive processes of rheumatoid arthritis (RA) made his pitch. He advocated the use of prednisone in combination therapy for this condition. Dr. Theodore Pincus, a professor at NYU, advocated the use of low dose prednisone (less than or equal to 5 mgs a day). He provided evidence that it was safe and effective at that dose. Dr. Anthony S. Russell, a professor at the University of Alberta issued the counterpoint. He provided historical data showing that prednisone had long term toxicity without significant benefit (in his opinion.) With all due respect to Dr. Russell, much of the data he cited was old data when higher doses of prednisone were used. He also contended that primary care doctors would be tempted to use prednisone if they saw rheumatologists using it. My opinion is this. I use low dose prednisone a lot in my practice. By low dose, I mean 5 mgs or less. I think it is effective as an add- on therapy. It is also a great "bridge" if the patient is transitioning therapies. I have seen very little long term toxicity associated with this low dose approach. And I think the benefits derived from improved activities of daily living far outweigh the negatives. I do think that doses higher than 5 mgs should be avoided if possible. I also don't think the primary care issue is that big a deal although I admit... I have seen some indiscriminate use in my community.
This is a small subset. The good docs know that predi increases P making it virtually impossible to control PsA while at the same time messing up the pain control centers which are the same mechanism that causes inflammation. So there are a few docs using it beyond an occasional acute situation. The a few who still use narcotics improperly as well. We just yanked the license of several of those. Narcotics cover the symptoms well too until they don't. The destrory the same mechanisms that the predi does. Its really quite simple biochemistry, but of course there are always those MDs who figure they know it all and can't take the word of folks who have spent years studying the immune response. Fortunatly you have docs who stay in their arena. Listen to them. Coming from the Mayo clinic is rarley a good thing with our disease.
