Hi everyone, I have to say that I am sitting here fuming because I received a copy letter from Rheumy Doc to my GP with all relevent information from my last appointment which was, wait for it....... last August. At that app he suggested that MTX was upped from 20mgs to 22.5mgs because my Das score was 6.43 which he says in the letter suggests hight disease activity.
Well I wondered why my GP had not altered my dose and now I know why, NO LETTER sent to GP. To be honest I should have phoned the Rheumy secretary to sort it out, but I didn't. Must have something to do with not wanting to take the meds at all !!
My next appointment is in a couple of weeks time on 8th Feb and I am gearing myself up to talk to him about my ankles which were very painful until this last week. My right ankle was so painfull that I couldn't bear to put my weight on it. Thankfully I've seen a podiatrist twice recently and she has built an insole up in stages to help alleviate the strain on outside ankle joint.
I've not been very successful at talking about any concerns at appointments, because you are whipped in and whipped out of the consulting room as quickly as possible and I've always felt that there isn't time to ask questions. But I have got to stick to my guns this time.
At the end of the letter he says " Her disease activity remains high and possibly we need to escalate therapy again. Yet at that appointment I enquired about MTX by injection and his answer was that " it would be too strong for me". I really am foxed !!
I know that there must be huge strain on the doctors and clinics as a whole because of patient numbers. But if the precious time a patient spends in front of a Rheumy Doctor does not allow time for patients concerns and follow up instructions to GP's are not sent on properly, what hope is there for satisfactory treatment of this awful disease?
Well, I feel better having got this off my chest. I wish you all well and thank you for patiently reading my rant. June xx
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Ooh gosh not good why cant people listen to patients. and were was the letter for the last six months ..talk about a delay.. make appointment with GP before rhuem appoint to discuss your issues. high das score not good..not to sure about the response re mtx injection?
Hi I just go to my drs and tell them what Rheumy has said and if he has increased dosage or changed things last time I saw him he put me on Meloxicam 1 tab but I told Drs it was 1-2 tabs which means I get larger quantiies and dont have to go back so often also the Rheumy will give me a script for folic acid as GP dishes them out 4 at a time he will give me 40 at a time and as Im planning a trip away for 6-8 weeks I am trying to stock pile all tabs I dont think it is uncommon for letters to take so long to get sent
June,That is way too long for a letter to come through. |I would complain to P.A.L.S about the delay in getting your letter and about how you don't get enough time to explain your concerns. Like Summer has said see your gp before your next appointment and explain to him and if he would get him to give you a letter. Also when you go to the hospital for your next appointment take someone with you eg; hubby,parent. That way there is someone who can talk on your behalf if needed and they will also be able to take notes as well.I never go to the hospital without my hubby. Hope this will help you. Sylvia.xx
|Thank you Sylvi, your suggestion to take someone with me is a good idea and I hadn't considered making an appointment with My GP before my next Rheumy app.
I have a good friend who has a nursing backround and I know she will be only too pleased to come with me, she actually came with me when I was diagnose with RA.
Morning all, June I agree with Sylvia and would never go on my own anymore,it's al too much to take in , and if you forget to ask a question the person you take with you can pipe up ,we are often to dam polite when at the end of the day it's our body our pain ,and we are all pumping this medication into our bodies,why shouldn't we have a say !!!!.
Hello minxy, I think you have hit the nail on the head about being too polite, because that's me through and through, but only until someone treads on my toes.
Also I think most of us are a bit like that (from reading threads of conversation on here).
The trouble is that we are stunned at first diagnosis, and then it takes time to come to terms with what is happening to our bodies. And then there's the drugs and most of us are not happy about what we are putting into our bodies and it takes time to accept all of this and settle down to our different path in life. However, it's time for me to stand up for myself, I think. Thanks, June xx
Morning all, June I agree with Sylvia and would never go on my own anymore,it's al too much to take in , and if you forget to ask a question the person you take with you can pipe up ,we are often to dam polite when at the end of the day it's our body our pain ,and we are all pumping this medication into our bodies,why shouldn't we have a say !!!!.
Soft hugs
Angie xx
Yes I agree with everyone - 6 months is way too long. Mine take a month and if I need a change in meds - as I did recently - I ask the rheumy to write a note. I was tempted not to this time I admit as I knew it would take an age for it to happen but then I'm a great one for knocking things on the head while worrying as I do it! Your DAS was very high so that's really suggesting you needed something more 6 months ago. If you see your GP first then you could voice your concerns and he or she would write or email the consultant on your behalf and this might help getting you switched from pills to injectable MTX. That way you could stay at same dose or take less to much greater effect? Also if you are on a high dose of MTX currently and still getting a high score you should be considered for anti-tnf now surely? I really would see your GP before and after to discuss. Tilda x
Hello Tilda, I usually receive a letter within a month, but also when the Rheumy doc has altered or wanted me to try a different drug alongside MTX he writes a hospital form out with all instructions and gives it to me to give to my GP. That way the changes happen really quickly. He didn't do that at last appointment, so there was some doubt about increase in the back of my mind.
I do think that Minxy is right about having our questions answered, because it is our bodies at the end of the day.
I must tell you something that will probably make you laugh! A couple of appointments ago with Rheumy Doc, I thought I must talk to him about my feet and get him to have a look at them, so I took my shoes and pop socks off while he was talking, then he examined my hands, wrists, shoulders and knees and ignored my bare feet. So I said how painful my toes and ankle were and he just played dumb and didn't answer me.
I was in some sort of shock at this and I came home to other half and said " I think my Rhemy doc is suffering from foot fetishism and daren't touch any ones feet". Well, we did have a good laugh about it.
So Tilda, I think it's a good idea to go see my GP first and talk to him about late letter and my concerns about Das score etc.
I hope you are OK after increase in drugs and thanks for you comments particularly about anti-tnf, I'll definately talk to GP about this. June xx
Yes I agree with Minxy and yourself - a lot of the problems we encounter stem from the lack of understanding and proper answers - but I guess that's an inevitable outcome from the shortage of rheumatologists and their high workload. I'm sure any good doctor should try to imagine being asked to take the drugs they prescribe but I dislike the assumption that a good patient is a submissive/ passive recipient of these medicines.
I'm glad you will see a GP before and after your next consultation because its good for GPs to have to think about all this as well, rather than just prescribing at the consultant's instructions. They are there to be our advocates where it comes to specialist services. Tilda x
Ps you story did make me smile in an indignant sort of way on your behalf. You do know they don't count feet for the DAS so that was probably where he was coming from? Mine doesn't seem to use the DAS as its never mentioned in letters and he has always (well I've only seen him 3 times!) examined my feet. This latest chap did ask if my feet were okay (and they were ) but otherwise he would have examined them I'm sure so yours must be very conscious of DAS protocol AND have a foot phobia to boot! Xx
Well I'm glad you received this historical document eventually! Sounds like you've already come round to the idea that you are going to have to take more responsibility for your own treatment from now on. I think most of us come to that conclusion at some point. It's unbelievable that you've gone 6 months with that high DAS score & the rheumy's recommended increase in mtx has not been implemented.
Like you say it is hard to get heard in appointments but at least next time you'll have some very big and clear concerns to voice. I think Tilda's point about your high DAS score is very important - your rheumy has called your disease activity 'high' and his tone shows concern, yet absolutely nothing has been done for you for nearly 6 months. I'd emphasise those facts if I were you. And yes, a little bit more mtx seems a bit feeble for such a high DAS & I think you should make that point loud and clear too. If your rheumy has a good reason for sticking with 22.5mg then he better explain his reasons to your satisfaction given the appalling delay you've experienced.
I know you can't keep angry 24/7 till February but please keep the outrage & determination simmering till you get the service and help you deserve.
I'm not sure what your situation is, in terms of whether or not you take other DMARDs with the MTX and whether you have tried any other DMARDs before going onto this. If you have tried more than one DMARD it may be worth asking the consultant about biologics at the next appointment.
NICE have set out criteria for people to meet before starting these drugs, which says that:
1. You have to have tried MTX and at least one other standard DMARD.
2. You have to have had your DAS measured on 2 occassions, around 1 month apart, and on both occassions it must be above 5.1 or above.
Whether you meet the criteria for biologics or not, a DAS of 6.43 is very high. 5.1 and above is deemed a high disease activity score, and many people are calling for this figure to be lowered, so your DAS is really quite high.
Obviously if biologic drugs are mentioned in the appointment and you would like more information please feel free o call our helpline. We are available Mon-Fri from 9.30-4.30 on 0800 298 7650.
Regarding the length of time the letter took, 6 months seems very long, but not sure that it is worth going to PALS just yet. I definitely think you should mention it to the consultant when you see him. He obviously needs to know that your MTX wasn't upped anyway, but will also be useful for him to be aware of this delay and he can follow this up with his secretary.
Hello Victoria, thank you for your comments which I have read with interest. I do fit all the points in the criteria for consideration of biologics accept Das scores one month apart. I have always been aware that my Das score has been above 6 generally since diagnosis 20 months ago, but I have not been aware how high that is until now.
My Rheumatology Dr started me on Methotrexate to begin with and wanted me to take another drug along side, so I tried Hydroxychloroquine first which had bad side effects for me. Then Sulphasalazine which caused mouth ulcers and nausia and finally Leflunamide which caused very bad nausia, sickness and tummy pains which continued for some time after I stopped taking them.
There are changes in my ankles which I am very worried about, particularly my right ankle which I was in so much pain with just before Christmas that I couldn't bear to put my foot to the ground.
Anyway, I will make an appointment with my GP before my appointment at Rheumatology Clinic and perhaps he can give me some advice about what to say to my Rheumatologist regarding my Das scoring and concern about my ankles. I will call the help line if biologics are mentioned to me.Thank you for good advice.
I summarise what's been happening to me since the last appointment as well as what changes there have been to medication.
Then I have a list of issues to cover. I sometimes write down the answers if I don't think I will remember.
At the end of the appointment. I sit for a minute reading my list to make sure everything has been covered.
I know that the consultant thinks I'm a pain in the ....! He usually manages to keep his sense of humour(especially as there is usually someone training in with him - I'm usually seen in the teaching clinic because I'm "interesting and challenging" - his words).
But I have found that if I let him run the consultation, I come away not having had my worries or problems answered and feeling frustrated and angry.
So my message is - be assertive, be a pain in the ....but get what you need!
Hi oldtimer, You are absolutely right in what you do to achieve satisfaction at your appointments with Consultant and you have just discribed exactly what happens to me at my appointments.
My consultant does run the appointment his way, in the same routine every time and he doesn't like to deviate from this and that's exactly why there is never time for him to answer any questions I might have.
Of course I understand that he has a clinic to get through and so he keeps to a tight routine in order to see everyone. I've come away feeling very frustrated and upset on more than one occasion.
Thanks for sharing your thoughts and experiences with me, it will be a great help because I am determined to be assertive and a pain in the.... too!
I feel it should be a partnership really and there should be an understanding that, while time is limited of necessity, the consultation has to work to both of your satisfaction. I once went in to see my GP and gave him my list of topics and reminders etc so he could pave the ten minute consultation himself knowing what I needed him to do and to discuss. It worked brilliantly and I was out exactly on time. Perhaps this is what you should do June as its like him chairing a meeting with a clear agenda set by yourself? X
Hi Tilda, well I think what you did with a list of topics and reminders is simple and effective and the best solution yet. I have thought about asking to be seen by different doctor at the clinic, but I'm not entirely comfortable with this as a solution.
I am seeing my GP next week because he will be confused about this late letter too, and I want discuss my high Das score with him and hear what he has to say. After all it is our GP's who see the wider picture of our disease control. You are absolutely right in what you have said, about them being an advocate between patient and consultant and not just the one who signs the prescriptions.
I will write a list of topics and reminders to take with me to rheumy appointment.
Thanks for all your thoughts and suggested solutions, I really appreciate it.
Good June - get those bullet points all ready to hand him or her and let him chair the meeting - and it is a meeting not just an opportunity for him to hold forth or dismiss at whim! Tilda x
Hi again I do not agree with the 6 mths wait for the letter BUT having thought things out a Rheumy is seeing going by my clinics 20-30 people at least a day 4-5 days a week covering a few hospitals so a least weekly that is over 100 letters to be dictated per week I know he uses computer to make changes in dosage and treatment while Im there but that is a lot of time spent sorting out and sending letters so some times things do take longer in getting done if like my Rheumy fits the extra patients in so less time for letters I will say I like my Rheumy he takes time and we do have a laugh and joke I know some are not like that but give them a break when you look at it would you like to dictate a min of 100 letters a week or see a few extra patients
Hi Liz, thanks for your comments, I understand the points you have raised only too well.
My husband has been diabetic for twenty odd years and has all the health problems associated with the condition. Not least eyes, skin problems, he has no feeling below his knees so is wheelchair bound and his hands are going the same way. His kidneys have packed up and so now he now has dialysis three times a week.
Over the years I have gone with him to the many clinics he has attended. We both have the highest regard and appreciation for all in the NHS. From the doctors, nurses and district nurses who have been coming to redress his ulcered feet and legs for a couple of years now.
I have been his carer for a good few years now and when I was diagnosed with rheumatoid arthritis I was absolutely distraught, not just for myself, but I was worried about how I was going to cope with my continued care of my husband. But I've made many changes to our daily life in order to make things as easy as possible and I have to keep myself as well as I possibly can, for obvious reasons.
So, because of my situation I have probably reacted more strongly to this late letter of mine than others might. But there is no way I would want there to be any comeback on the secretary who perhaps was so under siege that the letter to my GP and myself, got overlooked. June
I don't think the delay will have anything to do with the rheumy necessarily - he probably dictated it quite soon after your apt but there is a desperate secretarial shortage in many hospitals apparently (cuts of course) and the secretaries then have a massive log jam to get through. This might not be the case for your rheumy but my GP is on our local health board and when waiting for the first consultant's letter he got a bit exasperated at the length of time waiting for it and phoned the hospital in Aberdeen where it was explained to him that it was secretarial shortages that were causing these delays in letters. He emails my consultant directly now when necessary. Tilda x
Actually Tilda, with hindsite I believe I know what has happened to trigger my late letter. I have seen a podiatrist twice in a short space of time, in fact my last visit to her was friday week ago. She showed some concern about the changes in my right ankle particularly and I know that she intended to write to rheumy doc. So perhaps the letter triggered a discovery that this letter had not been sent.
Your GP sounds as though he's on the ball which is good. I often wonder how the NHS works as well as it does. It certainly is under siege and under staffed (probably made worse by cuts of course) as you say.
So, it helps to be on the ball ourselves, doesn't it, and I will know another time to ring the clinic secretary if a letter is late, particularly where a change in medication is involved.
I hope all is well with you. June x
That's good June. Yes my GP is s**t hot as a doctor - I'm very lucky to have him. And there's also a woman in the practice who I sometimes see although she only works part time so its rarer that I see her. They share info and discuss patients so it works really well and I try to see both with equal regularity. Sometimes I feel like a bit of a time waster as i tend to go once every few months and sometimes once a month (for mtx blood tests)but as I have no rheumy nurse and see the consultant so rarely I think its part of the coming to terms business and they don't seem to mind unduly. I think it makes a nice change having someone who usually bounces in defiantly and says "I'm fine" when asked!
And I've actually been fine since the higher dose on Tuesday so all that dread was OTT. My fingers are aching and stiff with knuckles raised and two went deep blueberry purple out in the icy cold today which was a bit weird but reminded me I do probably have RA. Not like you with your huge DAS - will be a good thing for you to see the consultant soon. Tilda x
Good afternoon Tilda, It just goes to show that if you have good alround support it can make the difference between struggling and going forward with confidence.
I have my blood tests 4 weekly, but sometimes fortnightly and I really get on well with the nurse. She has to be careful when it comes to protocol naturally, but she will slip in a nod or wink to show her feelings about something or other, sometimes a suggestion.
Hope your blueberry fingers have recovered, just a bit of a reminder of your condition!!
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