Hi I have just had my second appointment with my consultant. I was diagnosed with PSA on the 6th of September and put on methotrexate which was fine for the first 11 weeks, on the 12th week the dosage was upped as it had been every 4 weeks and I came out in a rash and blisters on my hands, I saw my GP who is brilliant and he told me to stop the methotrexate and go and see my consultant the appointment was already booked thank goodness. When I got in there he had my notes and was looking at them and he said so you didnt get on with methotrexate then? to which I replied no. He asked me how things are (pain wise) and I told him there has been no improvement at all. He then started looking at my xrays and said there isnt anything spectacular to see on there, I told him the pain was bad still in my back, hands and feet, he then looked at my back xray and said but there is no back involvement the xray is completely normal, he asked me to take my socks and shoes off and said that my toes were swollen and I told him about the pain I have in the bottom of my feet he then examined it and pushed and prodded it and I told him that it hurt and he said it was plantar something (cant quite remember the other word he used). I have been suffering from alot of pain in my shoulders and neck and restricted movement and I told him this but he didnt make any note of it or even register that I had said it, I have come away from there feeling that he didnt understand. I wanted to to talk to him about personal things but he was in a bad mood and obviously didnt want to know. He wrote me a prescription for Leflunomide and said come back in three months and Im sure it will be better by then as it is so mild!!!
Plantar fascitis?
Yep that was it thanks
I like how the doctor said that your arthritis is mild. He's not the one living it. Even though your x-rays may look normal, it doesn't mean that you are not in pain. You can also get pain from tendon inflammation, which doesn't show up on x-rays. You don't have to stay with this doctor if this continues. Or you can stay with him, but get more of your general care from your gp, and just bring test results to him. BTW, you may want to call and check about the 3 month monitoring for leflunomide. My impression was that it should be every 1-2 months when you start the medication.
I believe that the doctors do understand but they do not know how to treat our disease for there really isn't a true protocol. If you think about it, our medicine in which we are taking is for a broad range of illnesses. Each of us react differently to them. The doctors goal is to manage our pain and hopefully put us in remission. They try different medicines to help with our symptoms that we are telling them about and to try to help us get comfortable. My suggestion, which works for me since I know I have a limited time with my doctor, is to type out all your questions and concerns and hand him/her a copy and you have a copy and go over it together. Make notes while s/he is talking so you can remember what is being said. Make a journal of all your symptoms, feelings, etc. This way the doctor know exactly how you are feeling.
That is great advice. I almost always forget to ask about something, or the doctor glosses over something and I never really get an answer. Having notes would help so much. Also, at my last visit, I wanted to talk to the doctor about a course of therapy that she had offered that I thought had seemed extreme at the visit 6 months before. But, since my symptoms had worsened, I was ready to give it a try. When I brought it up, she said she had never talked to me about that particular course of treatment. I was incredulous, because I know what she had told me. If I had written down what she said, I could have referred to my notes. Thanks for the advice!
Rebel mom said:
I believe that the doctors do understand but they do not know how to treat our disease for there really isn't a true protocol. If you think about it, our medicine in which we are taking is for a broad range of illnesses. Each of us react differently to them. The doctors goal is to manage our pain and hopefully put us in remission. They try different medicines to help with our symptoms that we are telling them about and to try to help us get comfortable. My suggestion, which works for me since I know I have a limited time with my doctor, is to type out all your questions and concerns and hand him/her a copy and you have a copy and go over it together. Make notes while s/he is talking so you can remember what is being said. Make a journal of all your symptoms, feelings, etc. This way the doctor know exactly how you are feeling.
That doctor seems really disrespectful. Can you go to someone else? You deserve to be heard, and your concerns addressed. Also, the doc should know that XRays don't mean much when dealing with PsA. A lot of the pain comes from soft tissue inflammation, which doesn't show up on XRays.
On my way to the neurosurgeon as I'm typing this. Well, to be more accurate, his nurse practicioner (Spelling?). I am very anxious. I saw him several months back and he told me he was prescribing 4 weeks of physical therapy but if it wasn't better in 2 weeks to call him so he could set me up with epidural steroid injections. I didn't want the injections so I did the full 4 weeks of therapy. It helped some-I was still in pain but not to the extent I had been before. Finished that up about 2 and half months ago. Then, about a month ago I woke up in the middle of the night screaming in agony. My whole leg, hip and foot on my right side were hurting so bad my husband had to help me dress and put my shoes on. GP gave me a demerol shot that day, but by that night I was squalling again. I called neuro that afternoon to set up injection. That was on a Thursday and they called back and said my appointment would be Tuesday. Ok, so I lay around (on my stomach as that was only position that was tolerable) for the next 5 days. I won't say the injection didn't help some, but not much. Long story short-called neuro a couple of days later. Then the next day. Then the next day. No return phone call until the 4th day when my husband called upset. They told he wanted me to go ahead and get second injection. Fine-more laying around and waiting (shots were 2 weeks apart), I has been over a week since my second injection and I'm almost as bad as I was from the beginning. When I called and told them my GP said I need to see the neuro again they said they could set me up with NP. That was supposed to be yesterday. I live about 3 hours away. I called yesterday to verify appointment time before I left the house and was told "I'm so glad you called. We have had to reschedule all our appointments today. Can you come in the morning?" AHHHHHHHH! I told my husband I'm worried they are going to try to tell me I have to live with the pain. I have been off work for a month (I have a very strenuous job-both physically and mentally). Sorry so long.....just nervous as heck about the appointment! Oh, my background-43 year old with moderate to severe psoriasis since age 15. Diagnosed with psoriatic arthritis this year (so far only effecting spine). Spondylosis and stenosis in neck. DDD in neck and lower back with nerve in my lower back being pinched by spur. Have lived in excrutiating pain for over a year (mostly hip and leg and very rarely my lower back). Taking methotrexate and humira along with about 14 or 15 other meds (a whole slew of other problems including thyroid). Having a hard time dealing with the nerves/anxiety/frustration/depression. Back to the original posting-it is a true blessing when you can find a caring, concerned and competent dr. They seem to be the exception instead of the norm:(
Hi Lynbo, I am going to doctor today to get checked for PsA (was diagnosed with RA just over 2 years ago - as very similar symptoms) but been doing lots of research and think it's actually PsA. One of the medications they put me on was Leflunomide 20 and had severe nausea, diarrhea, headaches - I was also trialled on Sulfasalasene which was even worse - severe heart palpitations, shortness of breath, nausea, dizziness - took myself off as it seemed the doctors were now protecting each other and noone would help me. Did own research and educated self - turns out I was allergic to sulphur and had I continued to take it, it could have been fatal. Have been using natural therapies and treatments ever since - Inform yourself as much as possible, as some doctors are not very helpful or even caring.
ps... I don't have many outward signs so don't get taken very seriously, however my test results for inflammation was extremely high and one doctor was surprised I'm not in a wheelchair let alone no outward signs. I do get bad psiorasis now and again, but never made the connection till recently (after much research). It can be very frustrating and depressing, but what helps me most is meditation, tai qi, breathing exercises and keeping a positive attitude :)... Bottom line, if not comfortable with your doctor, find someone else :)
Hi Lynbo, it can be frustrating to say the least when your doc doesn’t appear to get what your telling them. The consultant rheumatologist I usually see is a really nice man but I find he doesn’t seem to take into consideration the tendon issues and the probems and pain they cause. His main concern is joint damage and as long as my x-rays remain the same he’s happy. In November I was to have my appointment, I had been keeping a pain diary since August and condensed this all into an easy to read table including timescale, body areas affected, pain score, what I’d tried to allieviate the problems, and if it had worked. I felt this would show him evidence to what I was coping with. As luck would have it I saw his Reg who I hadn’t met before, he was fantastic and loved my table which informed him of the progress of the disease…result was I left feeling understood and with increased treatment and hope. Incidently he had just joined the team at my local hospital from a large teaching and research hospital. I plan to request to see the same doc next time 
your consultant should read 'Psoriatic Arthritis - the facts' . the authors are based in a large clinic dedicated to understanding and managing patients with PSA. They clearly describe a protocol for diagnosing it.
Like you, the disease hasn't had a major affect on most joints despite soreness and swelling (it destroyed my knees ,one finger and has damaged my lower back ( over 40 years). The inflammation however caused major pain in my tendons in my feet ankles back neck jaw shoulders ribs lungs and heart. My xrays showed nothing in any of these areas.
I am currently on enbrel, 4mg prednisone and celebrex. I ride 20 to 30 kms a day and exercise with weights and stretching for an hour a day. For the first time in 25 years I can walk bare footed without pain.
Your consultant is ignorant. Educate him or change consultants.
Hi there and thanks to all of you for your replies, as I said my consultant wasnt a little bit interested in what I had to say, how on earth can they make educated judgements without listening, all of your replies have made me feel abit better because I know that I am not alone and not the only one having lots of pain, I wonder what pain medication you all feel is the best, at the moment I take Co-codamol 30/500 4 x a day, I have a Butrans patch on 5mg per hour, I take Amitryptiline 35mgs at night and then in the morning I take another 10 with the co-codamols. Another thing I tried to tell the consultant that I wonder if any of you have is, I wake up in the middle of the night and I literally cannot move, my shoulders feel like they are stuck and then to move them hurts like mad? Do you all get this? Anyway thanks again for helping, I need to toughen up abit I guess, Lyn x
That type of night time pain has happened to me. When I told my Rheumy about it he put me on Percocet at bedtime. Now I don't wake up in pain at night any more, and in the morning I can get out of bed without much trouble. During the day I take Tramadol for pain. I also have Voltaren gel for localized pain.
Leflunomide is Arvara and you may have better luck with that as it doesn't cause so much hair loss or oral mouth ulcers. I ha ve been on it for years but make sure you get you Liver Enzymes checked as it cause cause an increase. I take mine at night so I have less side effects and not much nausea like I did during the day. Drink very little or no alcohol also. Good luck and I hope it takes away your pain.
Rosebud
Hi Rosebud! I know that with MTX the big warning is about hair loss and mouth ulcers, which are usually dealt with by taking folic acid supplements.
However, there are additional side effects that you can get with leflunomide, and hair loss is one of them. It really all depends on how the individual reacts to it. So with MTX I got nausea and some mouth sores, but no hair loss, and no good impact. With leflunomide I'm getting a great benefit from it, but daily diarrhea and hair loss. There doesn't seem to be a winning combination. Right now I'm sticking with the leflunomide. We'll see how it does in the spring when I typically have my worst flare.
Rosebud said:
Leflunomide is Arvara and you may have better luck with that as it doesn't cause so much hair loss or oral mouth ulcers. I ha ve been on it for years but make sure you get you Liver Enzymes checked as it cause cause an increase. I take mine at night so I have less side effects and not much nausea like I did during the day. Drink very little or no alcohol also. Good luck and I hope it takes away your pain.
Rosebud
That is typical of specialists, but they are good at their jobs. They are confident and flippant…
I usually chat to my G.P. for a sympathetic ear
Wasn't there so can't comment too much. There isn't anything in the description of the event that indicates to me he doesn't know what he is doing. Rheumys do different things in different countries and even then it VARIES significantly by locale. BUT what you can pretty much count on is that they deal only with CHRONIC issues, seldom with acute (ie; flare)
A specialist practice has extraordinary overhead compared to primary care. Time is money and the DEMAND (given the waiting period to get in to one) exceeds the supply. I imagine they don't look forward to going to work every day either.......
Yup, I've been at this long enough to almost KNOW what was going through his mind:
"Shoulders hurt? Yup T -11 inflamation any deformity on x-ray? nope... Good what about the lower back?no deformity? good" looks like I'm on top of this need to get some inflamation under control to keep from progressing" Yup, its still pretty mild should be even BETTER next time i see you, Have a nice day...."
And sadly THAT IS his job. I don't mean to sound like the old sergeant I once was, but if you want sympathy talk to the chaplain (or your PCP) ASK your rheumy who takes care of acute pain/flairs. You might be surprised at his answer. You WILL get better treatment. Increasingly Rheumys don't do pain management and never have done feet (or eyes) they assume you know that and also assume youe PCP is managing your case (the PCP forgets thats his job. I'm lucky inthat my team of docs communicates well with each other, but then I make sure notes and rests go back and forth. Now I'm resonably certain my eye doc doesn't care I just had a toenail removed again but he's got the notes......
My rheumatologist is awesome. Im pretty lucky to have a women. My first visit she ordered blood work, xrays, and a bone scan. Second visit, we reviewed the bone scan and she prescribed steroids, third visit prescription for humira. Two month span, I talked to her at least once a week. She is very helpful with my questions I have and has even told me off when only after 3 days of feeling better (which was being able to walk) I was dancing, ultimately setting me back. I found her in top docs. I look everything up, if you’re not comfortable with your doc, there are so many others with better attitudes. I would just change doctors no need to have them stress you out more. For me, its so hard to deal with people who aren’t compassionate, i just walk quietly away. My pcp is always there as well. With docs you have trust them and not feel dismissed by them. I hope things get better for you.
There are a fair number of people (basically anywhere but the USA) who can't just find a doctor based on internet reviews. They wait months to get into the specialist (consult) based on a referal from their PCP. They need to make it work, as they may never get another chance. Actually depending on ones health insurance in this country it isn' t much different. In the USA, changing docs isn't without risk either, once you are considered a doctor shopper, it becomes harder to get great care. You don' t need to accept crap care but being an a**hole doesn't mean the care is bad. There is prettygood chance that todays a**hole is tomorrows hero.
Never give up hope said:
nMy rheumatologist is awesome. Im pretty lucky to have a women. My first visit she ordered blood work, xrays, and a bone scan. Second visit, we reviewed the bone scan and she prescribed steroids, third visit prescription for humira. Two month span, I talked to her at least once a week. She is very helpful with my questions I have and has even told me off when only. after 3 days of feeling better (which was being able to walk) I was dancing, ultimately setting me back. I found her in top docs. I look everything up, if you're not comfortable with your doc, there are so many others with better attitudes. I would just change doctors no need to have them stress you out more. For me, its so hard to deal with people who aren't compassionate, i just walk quietly away. My pcp is always there as well. With docs you have trust them and not feel dismissed by them. I hope things get better for you.
Here in my area there are only seven rhumeys so the wait is long. (And yes, I live in the US) I waited for seven months and that is considered a short wait. I judge a doctor not only by the doctor but also his staff. The nurse can make and break a doctor in my opinion. I have a great one and she has walked me through some stressful times.
Now my rhumey only treats the A part of the disease and he believes in treating it agressively. He refers me to my internist for all other issues and my derm for my P issues. He does not go to hospitals for he uses an infection control doctor for all admittance on his part. Now my internist will go to the hospital. (I have not been yet and hope I wont.)
Rudeness is unacceptable. Compassionate is nice but I believe in a qualified specialist who is knowledgeable in the field.