Just been told Methotrexate takes upto 6mths to work,... - NRAS

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Just been told Methotrexate takes upto 6mths to work, is this right??

Chrt profile image
Chrt
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Hi everyone hope you are all as well as can be :) Having a few probs with theumy clinic so spoke with PALS. They have come back & told me rheumy nurse said methotrexate can take upto 6mths to work is this right? so thats when I,ll see the consultant next, which will be in September. I heard consultant say see her in 4mths which will be July as I saw him 9th March. So upset with all this :(

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Chrt
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J1707- profile image
J1707-

I was told 12 weeks. 4 months makes sense for a follow up appointment with your Rheumy. There is normally an increase of dose if it’s not working after 12 weeks

Chrt profile image
Chrt in reply toJ1707-

Yes thats what I thought & I heard him say 4mths follow up but now nurse saying 6mths :( Thxs for that J1 :)

Chrt profile image
Chrt

Yes I heard rheumy say see agin in 4mths but nurse saying 6mths next appt very strange?? Thing is there is no receptionist/secretary. Just this staff nurse who deals with rheumy & a few others who I,ve not dealt with at all. I,ve already involved pals too late there. But only about this nurse. There,ve been other issues, I had to go tell them I hadnt been contacted for blood tests then last week had a flare in shoulders & knees along with vomiting upset tum. Rang him next morning (friday) he said could be this, that but on monday go to xray then come to clinic I,ll try speak with rheumy about steroid injection. When I got to clinic knocked on door woman answered, told her I was told to come see nurse, she came back & said oh he,ll ring you to give you an appt?? Excuse me?? I said what about the pain, she said oh you want the pain clinic? I said quietly this is a mess & walked away. Came home & cried, next morning got in touch with pals who just got back to me saying nurse said mtx takes 6 mths to work & I,ll get an appt to see rheumy then. Hence why asking on here is that normal? By the way not in UK in Gibraltar. Thxs for rplying :)

AgedCrone profile image
AgedCrone

Yes I’m afraid Mtx can take 6 months for any benefit to be felt…..& timings for appointments are very fluid so don’t get too upset if you don’t get the exact timing you expect.

Some people are lucky & feel the benefit sooner. It just maybe there wasn’t an apointment available in 4 months? But it sounds as your rheumy anticipates it may work sooner for you…..so let’s hope he’s right.

I’m afraid Admin can only give an appointment a consultant asks for if there is one available ….unless there is a dire emergency, we have to wait for the first available appointment when we start a new drug.

But if you feel things are getting worse at 4 months, have a word with your rheumy nurse to see if she could ask the consultant to advise.

But rheumatology is so short of consultants…timings between appointments, are often longer than we would like.

Chrt profile image
Chrt in reply toAgedCrone

I know & do understand how difficult things are A/C but I heard rheumy say see her again in 4 mths, also nurse said later he didnt know when exactly in July my apt would be..Truthfully things are no worse but I had a flare last week(thursday) both shoulders & knees. Side effects make me feel rubbish, nauseous no energy hardly any apetite. The staff nurse is the admin sadly....I,ve had to remind him I needed appt for bloods, then when I rang last week (friday)about what to do as was having flare he said come see him in clinic he,d speak with rheumy about steroid injection but before that go for xrays, when I went to see him on Monday another nurse said hed be in touch about next appt?? I came home & cried. Thxs for replying :)

AgedCrone profile image
AgedCrone in reply toChrt

I do know how just one more thing going wrong can get to you.

Recently I turned up for an infusion, that was months overdue, only to be told whilst sitting there ..the cannula already in my arm, but I couldn’t have the infusion because the bag holding the infusion had split. I’ve been on these infusions for six years & a bag has never split before. I’m convinced they had either forgotten something or they didn’t know what they were doing.

But it didn’t end there…. back I went the next week to get the infusion only be told I couldn’t have it that day..I had to go home & come back tomorrow, because the pharmacist hadn’t downloaded the drug into the infusion bag!

At that point , I stood my ground and said I would wait and I did actually get the infusion that day…but after 20+ years of rheumatology….I just thank my lucky stars it works…..so hang on in there..,your new drug may just be “the one”!

Chrt profile image
Chrt in reply toAgedCrone

Thxs for understanding A/C. That is just dreaful what happened to you!!!!!!!!!!! They know (or should do) these drugs make the difference between being able & relatively free of pain to being disabled & in agony it must have been so awful for you :( so sorry that happened to you :( Don,t know how you managed I,d have had a meltdown broke down crying. I,m usually so positive tho & really believing mtx + hydroxy will work but last week I came so close to not taking it ...but I did. Funny not too bad this wk but had my b12 injection Monday so now wondering if feeling awful etc is down to not having if often enough, its only once evry 3 mths. Thing is I was referred sept 2021, but when I went to dr again in feb 2023 barely able to walk with bad knee & still not heard from rheumy Dr printed off referral letter & told me to go straight up to clinic & tell them he was very disappointed & very angry & if I wasnt seen to I was to go up to next floor & make official complaint. Thats what I did & told staff nuesr what dr had told me to say. Thats how I got my 1st appt with rheumy on 9th march. On reflection saying what dr told me to say wasnt such a good move in some ways!

Staff nurse then went on to tell me 3 times he thought it was osteo arthritis but he,d be doing more blood tests as thats what rheumy would want. When I asked name of rheumy I told him he,s the same one who the private dr had video conferenced with & diagnosed me with ra & put me on hydroxy. I had to go back to clinic following wk, I asked him do I have ra, yes he said & carried on writing. I said well thats a relief because if not it,d mean I,ve been taking preds , often high doses plus hydroxy for 2 yrs for no reason & I,d been worrying about it. Wish I,d thought before I spoke. so all in all we didnt get off to a good start. But I wasn,t well not thinking straight so tired. even before I went on mtx & he put that little worm in my head maybe I dont have ra at all! So you see what I,m thinking here, staff nursebeing told off by dr then me initially being diagnosed privately by rheumy who turns out to be same one our nhs use maybe staff nurse isn,t too pleased when he has to deal with me .Anyway not long till I come back to uk & see how I fare there so if all goes well staffy wont be seeing me for much longer lol

But so sorry to hear you went thru all that with your infusion A/C & hope it keeps on working forever!!!!! Thans for telling me feel loads better now just chatting getting it all off my chest, been crying everyday since monday but stopped now, tomorrow is another day. And I,m dog sitting just one dog, till Monday so have to get myself together lol :)

Celticdancer profile image
Celticdancer

NHS is in dire straits that`s why its giving such bad healthcare. People having messed up appointments, no communication between health professionals or departments, doctors and nurses being like Dougal from Father Ted etc etc. It`s disgusting. I feel sorry for anyone having such bad treatment. There are some patients who are still having good NHS treatment but they`re the ones that have been whisked away to Narnia and found the magic unicorn. The NHS used to have good health professionals but many of the good doctors and nurses have left they`re now scraping the barrel with the staff that are left. Good staff are leaving due to being over worked and under paid. Get rid of the NHS now and get it replaced with something better.

Neonkittie17 profile image
Neonkittie17 in reply toCelticdancer

What do think would be better? Just asking, not being flippant. My two main NHS consultants are the same I’ve had for over 15 years and are top drawer and I’m extremely satisfied, and so is the more recent one I’ve seen since 2021. I’m definitely not seeing anyone who isn’t suitably qualified. My rheumy service has resumed as normal this year although one of my other two consultants is slower to see people this year. He’s been away on sick leave though but I was phoned by his colleague same level, and haven’t had issues of seeing or speaking to anyone.

The departmental admins and getting results sent and blood forms is a bit slower the last few years. I do know my friend in a neighbouring city had to wait well over a year from early 2021 to autumn 2022 after her initial appointment, to have her gall bladder removed and was told it was Covid backlog holding everything up and told doctors, nurses and staff were and are still burned out after the worst of pandemic and backlogs re treatment.

Yes, awful that things are really slow on the admin and communications side and like my friend’s operation and thousands of others being deferred and cancelled. I believe Chrt, who’s post this is, is in Gibraltar and has said previously that consultants/their rheumy goes over there from the U.K. to see patients periodically. No, it’s definitely not been plain sailing for me since diagnosis of RA in 1995 with all manner of things that shouldn’t have happened. It was better re admin and communication in my earlier RA years. A lot of countries/people still envy us having the NHS.

Celticdancer profile image
Celticdancer in reply toNeonkittie17

The NHS is not what it used to be but people need to stop worshipping the NHS and treating it like the holy grail. It does not provide the best healthcare in the world not by a long shot, it`s not the worst but it`s too far gone to save which has been planned and done deliberately in order to privatise it. A European style health service seems better, something similar to what they have in France, Germany, Belgium etc. Those countries have a heavily subsidised health service by the government but patients pay smaller fees than they would say in America. An American style health service is what I dread the most but the UK is more likely to go down the American route I think. Even though America has some of the best healthcare in the world, I`ve also heard horror stories of how some Americans have died as they couldn`t afford health insurance dependent on what state they`re living in. Here is a video of Yaron Brook who makes some good points about how the NHS is failing badly.

youtu.be/TTm6nLteFrQ

Yaron Brook is right that the NHS is killing people. He says if you have cancer, heart disease etc then it`s not good as the best doctors go abroad as they get more money. He says you get mediocre healthcare at best with the NHS. In order to get the best healthcare you need, innovation, creativity and freedom to do so. America has a free market and some freedom in healthcare as the American government is less interfering in healthcare than most other countries. He is RIGHT.

Here is a list of countries with the best cancer survival rates in the world. The UK is way down the list. Our government should be ashamed. I don`t worship the NHS. I don`t mind paying for a reasonable monthly subscription for healthcare if it means I get decent healthcare.

worldpopulationreview.com/c...

Neonkittie17 profile image
Neonkittie17 in reply toCelticdancer

It sounds very much like you’ve had a bad time with NHS experiences. 😑Sorry not got chance to read your links at the mo but will tomorrow. I’ve got slow Net connection so nothing much opening. Yes, our Government should be ashamed but they won’t be and that’s all I’ll say on here on that. I certainly don’t worship the NHS but if something’s gone right I’ll say so just as if something’s gone wrong.

Can’t recall where it was first reported there were some Sunak proposals for NHS patients to pay a standard set amount for an operation/procedure/treatment. It was some months ago. I think you’re right re us going down the American path and have several American friends so know how it works or doesn’t for them.

bienassis profile image
bienassis in reply toNeonkittie17

Well, Neonkittie17, I've been reading this exchange of posts with interest, and agree with what you say on the whole. Undoubtely, the NHS is going through a critical period - for various reasons. But the thought of an American system based as it is on private insurance with all that that implies fills me with despair.

We have been fortunate in the UK to have had a system based on direct taxation for so long - making us unaware of other systems and the difficulties faced by those who cannot afford any form of insurance. I have connections in France and Canada, and they have many complaints about their own health providers. Nowhere is perfect!

As for my experiences with rheumatology, I've seen many changes since I was diagnosed in 1967 with RD - some very good. It's difficult, anyway, to be very positive about a disease so intractable as RD, as it is so poorly understood.

Does the NHS need reforming? Of course it does - time dictates that, eventually, all institutions need reassessing. But let's think sensibly about it and not think that the grass on the other side of the fence is always greener. At my age, 87, I've had a long enough life to know that isn't necessarily so!

Neonkittie17 profile image
Neonkittie17 in reply tobienassis

Hi bienassis, I think you may be responding also to CD’s comments but your comments are to me. I’m not criticising the NHS but as others say there are issues. They need more assistance which keeps getting promised. I purposely didn’t want to list any unsatisfactory personal experiences in the past as they’ve been far, far more good than bad. I was really grateful and said so that I’d had/have excellent, top notch consultants and the same ones for over 15 years so please don’t think I am complaining about the NHS or nurses. My former employer is the Royal College of Nursing for several years, so I’ve every empathy for the nurses too.

I do stand by what I said to CD that I do feel this Government would like to make it the way of America. I really hope they don’t. My comment re that is definitely not anti-NHS. Yes, I am thinking sensibly. I do feel after what was in the press a few months ago, that Sunak wanted to make it so NHS patients paid for some of their treatment. I have never thought the grass is greener on the other side and once again, am very satisfied with my consultants and nurses. Just wanted to clear this up as I don't want anyone think I am anti NHS when I am definitely not. 😀

bienassis profile image
bienassis in reply toNeonkittie17

I'm so sorry if I gave the impression that I thought you were anti-NHS. On the contrary - I was agreeing with your comments, which were very balanced. My reply was a general one to all contributing to the thread. It was addressed to you because I thought you had summed it up very well. Perhaps I just didn't make that clear.

There is indeed a danger that the government might introduce an American style health system - which, as I mentioned, makes me despair. Our health service is designed to be universal - making no distinction between those with or without means to pay. That brings me back to taxation - it is essential that the government ensures that everyone pays tax commensurate with their income. But that's another question, although not unrelated!

My original comments were obviously badly put, but believe me they were not intended to be critical - far from it.

Best Wishes, bienassis.

Neonkittie17 profile image
Neonkittie17 in reply tobienassis

No harm done 💗 I assure you and I’m all for the NHS too. Thank you. I just didn’t want anyone to think I was ungrateful. Never. 💗. I think your post was very balanced and good. We wish it could be saved and improved. No your replies weren’t badly put but I just wanted to clarify I’m right behind the NHS supporting them. They are often so taken for granted. I hope there is a fair way to keep it still. Best wishes to you too. I know you always post some excellent replies.

Chrt profile image
Chrt in reply toNeonkittie17

Hi N/K yes I,ve just let celtic know I,m in Gib not uk :) Thxs for positive info re nhs as I.ll be over ther pretty soon lol. Hope u r doing well as can be :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

Hi Chrt, I hope you find a really good rheumy department and hospital. It’s different for every rheumy department but mine is doing alright at the mo. Far from perfect and no rose tinted specs here, but it’s alright. My RA is steady thank you. My immune out of sync is my issue. I hope your Mtx starts to kick in properly very soon. 🙏🏻

Chrt profile image
Chrt in reply toNeonkittie17

Thxs NK i.m sure I will, lost my rose tinteds long time ago hehe :D Good to know your rheumy dept is doing alright & your ra is behaving... I,d settle for that right now! Wouldn,t know where to start getting immune back into sync but hope you find the way soonest. Huge blow hearing I,m kept on mtx with no review till september instead of July but thats what they,ve said so thats how it is, I.ll just have to wait & see. I have noticed I,m not feeling so awful since I had my b12 injection on Monday am wondering now if theres a connection. Not given up on mtx will keep on with it & stay positive maybe it is kicking in thats why not feeling so awful who knows lol thxs :)

Chrt profile image
Chrt in reply toCelticdancer

Hi Celtic :) Oh dear sounds awful sorry you,re having a bad time with nhs :( I,m not in UK but relocating back shortly maybe out of frying pan into the fire!! I,m sure there are good places where it works well I,ll just have to be very careful where I settle :)

Flipper12345yellow profile image
Flipper12345yellow in reply toCelticdancer

I thank myself lucky for the nhs despite its failings.Due to nhs drugs and care, I was able to mobilise again,albeit slowly and with much pain , after being unable to even turn myself over in bed.

The majority of us will be stuck if we have to pay for our treatment permanently.

I for one would have to do without and suffer the consequences.

Long live the nhs.

Celticdancer profile image
Celticdancer in reply toFlipper12345yellow

I`m really sorry you`ve been in a lot of pain and had difficulty mobilising. I`ve been working in the health and social care industry for many years and the NHS won`t be around in the future like it has for the last 80 years. I give it a couple of years before the government completely changes it. It`s been getting slowly privatised since the 1970`s and is nearly completely privatised.

You could use helpful facebook groups that support your disease and continue using websites like this one to get suggestions off other people who have the same condition especially for cheaper, more natural alternatives to pharmaceutical treatments and more expensive medications etc. I think it`s past the point of no return now I`m afraid and I know this from personal experience and having seen the decline of the NHS and speaking to many others about their bad experiences as good NHS treatment is getting less and less.

Also the Met Police from this September won`t attend mental health calls as they don`t have the police to cover mental health anymore but the NHS doesn`t have the resources to deal with the amount of mental health issues that are now prevalent.

msn.com/en-gb/health/other/...

Flipper12345yellow profile image
Flipper12345yellow in reply toCelticdancer

Hi, Thank you for replying.I agree completely , I worked for the NHS.

Sadly, I was being idealistic in saying no to the end of the NHS.

As you said, it's already privatised /services contracted out.

The reality is in the future we will all have to pay privately for our health care and the only ones to benefit from that will be the insurance companies and shareholders.

It's been privatised right under people's noses and they couldn't see it was happening.

Such a sad loss.

Celticdancer profile image
Celticdancer in reply toFlipper12345yellow

It is a really sad situation but I`m afraid has to happen now as it`s at the point of no return. I hope that it can be replaced with something better (maybe a healthcare service that requires a reasonably priced subscription) and help sort out those people who abuse the NHS so they do not have medical resources wasted on them so that only those people with a real need get the help they need. The UK population is twice as big as when the NHS first started 80 years ago and too much money wasted and bureaucracy so it was bound to break at some point. Hopefully the good that comes out of it is that people will rely less on pharmaceuticals and more on cheaper, more natural and less harmful remedies for their health needs and learn to become more resilient and self reliant rather than relying on the welfare state to help them.

Flipper12345yellow profile image
Flipper12345yellow in reply toCelticdancer

Not hopeful whatever system takes over. Shareholders will be only winners .

Seatgeorge profile image
Seatgeorge

I was told 3 months by my consultant it's a gradual change that does make a difference, I saw an improvement in joints and movement after 3 months but not everyone is thexsame just persevere good luck.

Chrt profile image
Chrt in reply toSeatgeorge

Yes S/George thats what I thought was the norm, now had 11 doses but not sure if ra is improving just have longer to wait & see thxs :)

Runrig01 profile image
Runrig01

unfortunately rheumatology clinics were already struggling pre covid. It’s easy to see why, once patients are on their books, they are generally on them till they die, so the list keeps getting longer. This is unlike surgeons who discharge you once you’ve recovered. The actual booking of appointments is centralised, with specialists ticking a box stating when they want you to be seen, and if it’s urgent or routine. If it’s a routine follow up, they may have to delay it, in order for some of the new urgent referrals to be seen.

I seen my rheumatology nurse in October, she was concerned as all my muscles are extremely tender to touch. I have AS, unfortunately I can’t take nsaids due to having a stroke 5yr ago. She suggested I have a face to face with the rheumatologist at 4 month, which should have been end Feb or early March. I still haven’t heard, yet she wants him to consider adding another dmard. Now I’m in a flare, my feet feel like I’m walking on broken bones. I’m waiting to see gp next week, as my rheumatologist refuses to look at hands and feet till gps seen them. After this appointment I can chase for a review. I do have access to a good rheumatology nurse helpline who can amend appointments if needing to be seen sooner. Problem is if we don’t inform them we’re struggling, then they don’t realise that we can’t wait longer for our review. There must be someone overseeing this staff nurse you’re having issues with, perhaps speak with them. But yes, MTX can take 6 months to see full effect. Fingers crossed you’ll see improvements soon. Normally you would taper up your dose, it may be worth seeing if this is an option whilst you wait, assuming your blood results are ok.

In my area, they now have a private company, Connect Health, looking after stable rheumatology patients, to keep their lists manageable. Although anyone on biologics remains under the hospital at the moment. Something needs to change, these lists can’t keep getting longer.

Chrt profile image
Chrt in reply toRunrig01

Hi Runr, yes of cours makes sense lists keep growing as its a lifetime disease, never thought of that! I,m not in UK, I,m in Gibraltar but our nhs system is very similar to UK, Nearly all our Drs train in Uk few maybe Spain & most specialists come from UK some from Spain. The rheumy we have works in UK hospital but cos of the backlog there is only doing video consults which is what I had in March. Sorry to hear you are in a flare its horrible isn,t it, makes you feel so vulnerable & exhausted I feel for you & really dont understand why you need to see gp with hands/feet before seeing rheumy seems crazy to me :(

I did ring staff nurse & told him I was in a flare, he said come see me in clinic monday I,ll speak with rheumy about steroid injection but when I went a nurse I,ve had no contact with said he,ll be in touch with you about an appt??? Thats when I looked up pals, so rang them & asked who I could chat with about all this, they told me he was in charge of clinic lol Obviously I cant talk to him about himself but she said he does have a boss. I,ve said I dont want to make a complaint just sort these issues out in a civilised manner with an unbiased person, Pals rang me back yesterday telling me staff nurse said mtx takes 6mths to work & I,ll have next appt with rheumy in sept. No mention of leaving me in a flare after telling me to go to clinic with possiblity of steroid injection, no follow up to any side effects of mtx I could be having. Yesterday afternoon I emailed pals a long listing all the things that have happened. as there are a few other things not going right lets see what happens

I hope you can hold out till you get to see rheumy which will be very soon R/Rig & get some relief from the flare you,re in wishing you the best :)

Runrig01 profile image
Runrig01 in reply toChrt

I hope you get a resolution so on too. It’s utterly ridiculous to suggest a steroid injection in one breath, then state wait till September. Put your foot down and say you’re not prepared to struggle till then, and want them to consider the steroid injection. Good luck

Chrt profile image
Chrt in reply toRunrig01

Hi R/rig just done an update. Good new pals rang told me appt for July, also said staff nurse was going to ring which he did few 2 seconds later, After blurb with apology thrown in the middle he confirmed Appt in July, After I said what about this flare & side effects I,d had he changed the appt to NEXT Thursday 1stJune!! Complete turn around eh?? I was floored I can tell you lol. So all in all relieved that something has been done & I can get seen, Thanks for your help :)

Runrig01 profile image
Runrig01 in reply toChrt

excellent news. Hope it’s productive 🤞🤗

Chrt profile image
Chrt in reply toRunrig01

Hi Runr thank you, yes isnnt it the best news ever! I,m sure it will be, at the very least I,ll be able to tell him all side effects & flare I,ve had & how my bodies been misbehaving :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

Good news! Pollite persistence usually gets their attention when you are in the right too. Well done.

Chrt profile image
Chrt in reply toNeonkittie17

Thxs N/K really good news eh so shocked when after I explaine things(again)he said appt 1st June instead of July can u make it?? Nothing could make me miss it lol so from sept to july to june in the space of couple of days makes u wonder?? I dont have energy to fight barely enough to get myself there but then when I was turned away just the last straw thank goodness for pals & internet!! haha this,ll pass onwards & upwards really appreciate everyone helped me loads :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

I hope it is a good appointment and that you can discuss any reservations if Mtx isn’t doing enough but let’s hope it starts to very soon. 🙏🏻

Chrt profile image
Chrt in reply toNeonkittie17

I,m sure it will be N/K thxs I,m just going to tell him all side effcts I,m having, the flare & then he,ll tell me normal or not & what can be done about it simple no?? don,t answer that haha lol :D

Neonkittie17 profile image
Neonkittie17 in reply toChrt

Just do your usual honesty and hopefully he’ll see if things aren’t working for you when he examines you and talks with you. I hope something looks up for you though re Mtx. 💗

Chrt profile image
Chrt in reply toNeonkittie17

Its only video consult N/K so not much examination but I,ll make the most of it for sure :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

Yes be well prepared with a script as such!

Madmusiclover profile image
Madmusiclover

That’s not right. Phone the NRAS helpline for some support. Xx

Chrt profile image
Chrt in reply toMadmusiclover

Thxs M/M/L good advice you know I was going to & looked for their number but couldn,t find it my mind was all befuddled & I was so upset so gave up :)

Madmusiclover profile image
Madmusiclover in reply toChrt

here you go. Chin up. Onwards. We are here for you. 0800 298 7650

Chrt profile image
Chrt in reply toMadmusiclover

Oh thank u mmlover jotting it down right now! Will put update shortly as had pals ring me & then staffy good news appt next wk :)

Madmusiclover profile image
Madmusiclover in reply toChrt

good news. Pity it’s such a fight though.

Chrt profile image
Chrt in reply toMadmusiclover

Yes it shouldnt be tho should it, m/mlover takes all our energy fighting this disease alone. What worries me more is what happens when you,re unable fight :)

Nuttyshirlz profile image
Nuttyshirlz

I was told few months when I first started and I was also told you have to go up the hill to get over the top once you get over the top you will be fine and when I started to find it rough going and I kept on going after few rough weeks i was fine then I woke up and knew it was working that was 6yrs ago and I’m still taking it. With no side effects

Chrt profile image
Chrt in reply toNuttyshirlz

Oh thats so good to know N/shirlz! Onwards & upwards eh I,m tenacious so I,ll keep on trotting up that hill (not running like kate b lol) till I get over it :D thxs look out for update shortly just had p[als on phone then staffy with good news :)

Nuttyshirlz profile image
Nuttyshirlz in reply toChrt

make sure you up your drinking of water before you take it. My nurse told me to drink loads of water and have a light tea before you take it. I take mine tonight

Chrt profile image
Chrt in reply toNuttyshirlz

Thanks for advice NuttyS :) Thing is I do normally drink pleanty of water from afternoon onwards ( not keen on fizzy drink never buy any) but past few wks apetite has been dreadul, dont feel thirsty much & having to repeatdly tell myself get a drink you need to drink & sometimes forcing it down me. But I am trying :) Be thinking of u later hope they go down easily & quickly,,, I take mine Mondays :)

Nuttyshirlz profile image
Nuttyshirlz in reply toChrt

yes I don’t drink fizzy neither only water or juice, yes that’s what I’m like no appetite or feeling thirsty I also tell myself to eat and drink even though I don’t feel like it because I know my body needs it. I do a lot of smoothies too so I know I’m getting nutrients

Chrt profile image
Chrt in reply toNuttyshirlz

smoothies are good N/s but such a pain reminding yourself eat/drink did u eat today, when did u last have a drink as I say I,m trying...no replies saying yep we know u are hehe :D

Nuttyshirlz profile image
Nuttyshirlz in reply toChrt

I sort of think it’s teatime have food lol you get used to it you got no choice lol yes I’ve been told I’m very trying too

Chrt profile image
Chrt in reply toNuttyshirlz

haha :D

Neonkittie17 profile image
Neonkittie17 in reply toNuttyshirlz

Yes and similarly I was told don’t let yourself go all the way down the slope to the bottom before you ask for help as you’re then harder to treat. That was my former rheumy.

Nuttyshirlz profile image
Nuttyshirlz in reply toNeonkittie17

yes so was I don’t suffer in silence and always message your rhemy if you got any questions no matter how big or small. I’d just love to see one nowadays and can’t message anymore as they don’t accept messages since covid

Neonkittie17 profile image
Neonkittie17 in reply toNuttyshirlz

Oh no, you can’t send an email anymore? I do hope you can resume a ftf clinic appointment soon. 🙏🏻 I went to my first one end of February in over 3 years but have had many review phone calls. They have been really good there.

Nuttyshirlz profile image
Nuttyshirlz in reply toNeonkittie17

I had an X-ray on my hips in feb 21 said will discuss on next appointment one was sent for video call for aug last year and couple of days before it was cancelled and they said will send one out. I’ve rang them and they say we haven’t forgotten about you we will be in touch soon

Neonkittie17 profile image
Neonkittie17 in reply toNuttyshirlz

Two years!! I hope they get in touch very soon. x

Nuttyshirlz profile image
Nuttyshirlz in reply toNeonkittie17

yes before that it was every six months. I started to ring them in jan but you can’t even ring them now because you get music and they don’t answer the phone no matter how long you sit listening. Or how many times you try and I’ve tried a lot lol

Chrt profile image
Chrt in reply toNeonkittie17

Vrey wise man N/K :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

A lady! All the rheumys I’ve ever seen since 1995 have been female!

Chrt profile image
Chrt in reply toNeonkittie17

Ahhh so sorry N/K & lady rheumy lol :) My sisters was a man, my aunties a man & my mum(polymialga) also men (staff nurse here at rheumy clinic man) & mine yep u guessed... a man! lol Funny enough the rheumy I,ve earmarked to see when I get over to uk is a lady, change is as good as a rest so they say :)

Neonkittie17 profile image
Neonkittie17 in reply toChrt

ladies‘ takeover and always has been in my rheumy department! 😀

Chrt profile image
Chrt in reply toNeonkittie17

Gal Power all the way N/K :D

Neonkittie17 profile image
Neonkittie17 in reply toChrt

Yesss! My endocrinologist and immunologist are guys, but they’re are great too.

Evie3 profile image
Evie3

you might need something to take the edge off in the meantime if u r struggling.

My RA helpline have an off putting message on the ansaphone….you start to believe you are a nuisance! 😭

Chrt profile image
Chrt in reply toEvie3

Hi evie thxs yes I think I need something cos flare I had last wk was not good both knees & both shoulders left me incapacitated :( I,m not in UK I,m in Gibraltar things are a bit different here but right now am ok just tired etc. Yes I was made to feel a nuisance & even worse my disease had no relevance to him(staff nurse). You,ve got your meds, now go away we,ll see you in Sept dont bother us again. After speaking with pals all has changed & I now have an appt with rheumy for next wk 1st June which is really good news & I,m so relieved :)

Evie3 profile image
Evie3 in reply toChrt

brilliant. Just cant let it get a hold……I had to have steroid infusions over 3 days to tide me over until Rituximab worked. I hate having them as not good for our bones…..but sometimes needs must. All the best

Chrt profile image
Chrt in reply toEvie3

Ohhh you poor thing Evie not nice eh :( but if it works the price u have pay! I,m sure rheumy will come up with something for me & things will get better, thxs :)

Evie3 profile image
Evie3 in reply toChrt

positivity! 👏👏👏

Chrt profile image
Chrt

Absolutely Evie!! :)

It can take a while to get you on the right meds. They areincreased in increments so your body gets used to them. And so they do not ‘over’ prescribe. I think it was 2 years before my meds started to impact.

Nothing with RA happens quickly.

Chrt profile image
Chrt in reply to

So I,m finding out C/L!!! Although have to disagree about 1 thing those flares take you down so quickly you dont know whats hit you hah not so slow then is it lol Thxs :)

Nyreedw profile image
Nyreedw

No mtx should be working within 12 weeks if its going to. After 12 weeks my rheumy added another med in. I ended up on 3 together. He only allows 12 weeks before assessing. X

Chrt profile image
Chrt in reply toNyreedw

Thxs Ndw, after speaking with pals got an apt with rheumy for this thursday. Today its my 12th dose mtx so see what he says in a few dys :)

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