My Liver function tests are slightly out of range (0-35) mine were 42 last time and 46 recently. My Rheumatologist proposes that I come off Tocilizumab and start Methotrexate .
It was my understanding that Metotrexate also caused raised liver enzymes. I don’t want to alienate my lovely Rheumatologist but I really don’t want to start Methotrexate. Have I really run out of options?
Any opinions/ info would be welcome. I am off to browse FAQs.
So sick of feeling sick. 😖
Jane - l have wanted to ask you before but why are you so against MTX? Angela
The side effects and anecdotal evidence. I would love to be wrong and find my wonder drug which is perfectly possible. After all Tocilizumab makes sobering reading too. So a kind of instinctive prejudice I suppose, since the early days. Also the lack of hard evidence that it is good for GCA/LVV and PMR. At least studies show that Tocilizumab helps the root cause of the disease in some patients. There is no such evidence for Methotrexate but I am ploughing through the section on FAQs as we speak.
I’m here Jane if you have any questions l had Liver Issues & was taken off MTX that turned into a year but it wasn’t the MTX causing the problems it was the Steroids & l deteriorated rapidly & went back to as bad as l’d ever felt….
I don’t have any issues with it now - at first l was nauseous but l got through that & it did make me tired the following day but that wore off in time & l always kept the next day free so l didn’t have any commitments.
I notice more & more Consultants are recommending it to Patients on here - have you discussed it with Sarah?
Good Luck Jane 🙏🏼
I would appreciate the upside of Methotrexate. What were the advantages? What did it enable you to do? This is something I have not read on here beyond “ I’ve been on it and had no problems”. I am seeking more than that after 6 years.
Will write about when l first went on MTX for you Jane & attach - have you read my MTX Story in FAQ’s?
Back in 2013 I had two Major Flares almost concurrently & my Consultant prescribed 30mg Pred x 1week; 20mg x 1week; 15mg x 1week then return to reducing by 1mg monthly - however l flared again & he repeated the dose but by now my face & neck were huge, l could barely put one foot in front of the other or bend down without getting out of breath & they tested me for Heart Failure, which thankfully l didn’t have at that point.
I had an Emergency 2nd Opinion from the Wonderful Dr.Lim (RIP) as they were about to admit to hospital…..
She started me on MTX @10mg until
I was checked l was doing OK (2weeks) it then went to 20mg - l’d had a Chest X-ray a couple of weeks before & had all the blood tests done before l took the tablets followed by two weekly blood tests.
l reduced by 1mg per month until l got to 10mg then l went down by 0.5mg to 7.5mg; apart from the initial nausea & tiredness l never missed a beat.
My full Story is in FAQ’s so worth a read but it may need updating 😉
healthunlocked.com/pmrgcauk...
You poor thing! Much worse than me I fear. I do recall parts of the story come to think of it.
I will also share the "up sides" I've experienced since starting Methotrexate on Jan. 3 of this year.
I never really did have any of the negative side effects I was preparing myself for. Early days yet (only on MTX for 8 weeks or so), but I only had a light-headed feeling the first week, and some minor gum irritation that went away when I upped my weekly folic acid.
I waited 4 weeks before I began a 6-week taper down 1mg followed by 1 week at the new dose before starting the next 6-week taper. It seems as if I have managed to drop down from 9mg of pred to 8mg (although I do have the one week at 8mg to complete next week). To give you perspective, I was stuck at 9mg for over 2 years, and each time I attempted to even drop .5mg of pred, I flared (a total of four times in 2 years).
So although it's still early, I am calling it a "success". I understand your hesitation, I certianly was not keen to onboard another medication, especially one with so many potential side effects (like pred). In the end I decided to try.....I could have (and still can) always stop, if I experience any negative side effects.
And, you can always drop down now in 0.5mg as it’s less stress on the body. Good Luck 🍀
I start my first drop to single figures on Monday 🙏🏼🍀🙏🏼 in a very long time!
I’m doing 10-9mg as that’s 10% but after that it’s in 0.5mg & l’m only aiming for 7.5mg…….
Can I ask. If your liver readings were high due to Prednisalone, how did you get them down in order to restart Methotrexate?
SheffieldJane
My Serum ALT Levels have risen markedly twice - (the last time to 78u/l) l don’t have the figures to hand of when it first happened but the Locum stopped my MTX immediately (however, they should have repeated the bloods first!)
Anyway, l had to have a Liver Ultrsound which confirmed a Fatty Liver, then a Fibroscan which thankfully although l had a Fatty Liver there was no sign of Fibrosis or any stiffening……
But long story, short - l declined greatly without the MTX & had to keep increasing my Steroids - l eventually saw my now Consultant & l started a very slow return on Low Dose MTX with weekly blood tests to where l am now at 25mg MTX & back down again to 10mg Pred - Next Taper starts on Monday!
How l improved my Fatty Liver was by Diet, co-incidentally my HB1AC crept up to 47 (48 being classed as Type 2 Diabetes) so as l lowered my Carb intake both results started to improve then l eventually got my Liver (Serum ALT) & my HB1AC back to ‘Normal’ Levels.
Everyone’s Experience of Medication is different good & bad but Sarah seems convinced it’s worth a try but my only reservation is you might not do well on it as you’ve always been so against it.
Angela
Did you cut carbs out completely as I’d love to reduce my fatty liver. I’m on Prednisolone 4mg/5mg alternate days but can’t get lower at the moment. Taking Paracetamol to help with bursitis in my leg.
Hi - this is my story of how l lost 2stone, reduced my Hb1Ac & got my ALT Levels back to Normal. I couldn’t give up Carbs completely or Sugar so l did it in a way to suit me….
healthunlocked.com/pmrgcauk...
Good Luck
MrsN
PS did you know Coffee is good for the Liver?
Thank you for taking the trouble to ( probably) repeat this. I am already on a pretty healthy diet, no alcohol, meat, carbs. Toc is seen as the culprit for the raised liver enzymes. Normal with Pred alone. No, once I have made my mind up, I tend to stick to a course of action. I do all the prevarication beforehand which is what this is. It also helps to rationalise the fear. I am, as ever, grateful to the generous people on this site.
I wish you lots of luck Jane 🍀 l really do as TCZ hasn’t been a walk in the park for you.
Remember to drink lots of water & keep the following day free so if you are tired you can just chill.
The smell of ‘fat’ eg hot cooking oil made me nauseous - that lasted for about a month the very first time l was on it. But l don’t have anything like that now - you do need to persevere at first as the side effects decrease as your body gets used to it.
I much prefer the injections, they are delivered to me but l still get my Folic Acid with my Regular ‘Script.
I’ve got a link which l can send you re contraindications to other Meds - there’s a couple of Antibiotics but l always cross check anything new.
Generally they don’t appear to issue the Record Book these days but there’s a good few tips in it. You’ll also be issued with a Hotline Number for the Nurses (l know you have access to Sarah anyway) but the Nurses are very knowledgeable.
Don’t eat unpasteurised cheese or milk, raw shell fish or very rare meat. Also don’t eat Grapefruit as is common to many drugs, poor old grapefruit 😉
Once again Lots of Luck 🍀🍀🍀
Angela x
Is the injection an epipen ?
Like an Epipen - Metoject & many different doses.
Thanks!
Thank you for sharing your experience. Every little helps.
This is part of my preparation for speaking to Sarah. Thank you. She had just emailed me.
Sorry about your results. I have been on Tocilizumab for nearly a year… for RA.When I was on methotrexate I felt so ill, as though my liver/body was poisoned… couldn’t eat anything… so told my then rheumatologist I wanted to stop using it. I somehow think methotrexate is worse than tocilizumab.
I suppose they affect us differently. Perhaps others find methotrexate slightly less ‘damaging ‘. Unfortunately drugs all have nasty side effects…
Don’t be afraid to upset your new rheumatologist, at the end of the day you are taking the drug, not them. You have every right to tell them how you feel and you can’t be forced to take anything that you don’t feel comfortable with. Of course many serious health issues often need such drugs in slowing the progression down, so this leaves very little room to manoeuvre….
Do hope you can sort this out Jane. 🌺
Thanks for this JGBH. My Rheumatologist has been with me since the beginning (6 years) and knows that I am reluctant to take Methotrexate. She managed to get Tocilizumab for me without the Methotrexate trial.
My new (1 year) rheumatologist managed to get Tocilizumab without methotrexate for me too…. My previous rheumatologist wasn’t so understanding. Hope you can find a way forward…
Hi, I have taken methotrexate from the beginning so don’t know how I would be without it. 5mg of folic acid on one day and now down to ten mg of methotrexate the next day. Both straight after a good lunch. KI stop when necessary ie. Before vaccination and when I had breast cancer surgery. I have never had any problems with blood tests and no sickness.I now take chemo drugs for breast cancer and risedronate for bones. Both of which I did not want to take, Feel tired and aches but bloods are ok.
Maybe try it as you have struggled for such a long time and I know your consultant will be doing her best to help you.
Sometimes we just have to hold our breath and jump.
Take care whatever path you choose. Jen 👩🌾
Thanks Jen, you certainly know about courage.
Thanks for your kind words. If only…. I am the one in the deep water thrashing around and going under only to find when I bob up that I am a long way from the shore. I think at times this is what the struggle feels like and so we understand how hard it can be. Jen 🤗
I've had no real problems with methotrexate, apart from some tiredness the next day, which I could work around. That said, I'm not 100% convinced it's been particularly effective, as my GCA relapsed once I got below 15 mg pred daily. I'm now on tocilizumab + methotrexate but am planning to ask Sarah about the pros and cons of dropping the methotrexate, just in the interest of not taking more meds than I need.
Thanks, I would be interested in what value Methotrexate adds on top of Tocilizumab.
Yes, that's the 100 dollar question. When I was first put on methotrexate, back in September, Sarah said that she wanted me on it because it was particularly good at protecting the brain, the concern being that I'd had multiple acute strokes, which had happened 11 days after my GCA diagnosis and when I was on 60 mg pred. But I'm interested in knowing more precisely what it does for me that tocilizumab doesn't!
Protecting the brain would be a definite selling point for me. Getting me off Pred is all I have been offered.
I’m sure you can have a discussion with SM. Tell her how you feel she will listen. She delayed me starting MTX when my sister passed and was due to start this week. However there was a mix up and I sat in Chapel Allerton Hospital while SMsat in St James. She couldn’t apologise enough and will see me in a few weeks. I was so relieved with this hiccup. Why are we so afraid - because we feel so s..t is the real reason. I have to say you seem to have persevered more than most with the side effects. I’m not suitable for TCZ because of the infections it causes and my poor immunity or Leflunomide because of raised BP so it’s MTX.
What dose of pred are on and why do you have to start another DMARD. Is what I would be asking SM.
I know you’re not looking forward to starting MTX & believe l wasn’t either but l was looking at a great deterioration in my health, l needed a higher & higher dose of Pred so l really didn’t have a choice……
Fear of the unknown is often harder than the reality, yes l felt nauseous & for a full month l only ate chicken & mainly chicken sandwiches but it gradually passed.
Drinking lots of water is key as it helps flush the toxins out.
There’s no doubt it doesn’t suit everyone but what does & you maybe missing an opportunity to reduce the Pred.
I found the tablets more inconvenient - 10 tiny tablets getting stuck behind my nails 💅🏼 but the injections are a doddle.
Let me know when you start Terri - Big Hugs 🤗
Angela
I know you are right and I can’t carry on feeling like this so will give it a try. The hiccup last week, causing delay in starting treatment, has been the delay I wanted (have my sister coming up from Sussex shortly and I wanted to enjoy the week with her). So now I have no more excuses. SM says will start me on low dose tabs to help me get started then injections. Your advice on what to expect is useful. I feel somewhat nauseous now anyway with seemingly no end to it so nothing to lose. So funny you and your nails….I will let you know Angela. Thank you for your support. 🌺
Good luck Telian. She’s clearly on a mission. I sincerely hope it helps. Let me know. I hope you have a lovely week.
I going to see my favourite TV chef James Martin!
Have an amazing time!
Thank you I surely will - seeing him at City Hall, Sheffield.
If Angela, If. Thank you for the encouragement, but I am not facing increased Pred though no doubt it would give me a lift. I do not have recognisable PMR or GCA pain, just constitutional symptoms and fatigue, general malaise - steeling myself to walk across the room. Sorry, I see that was for Terri.
No probs - but hopefully you’ll ‘get more bang for your buck’ as a Steroid Sparer. Better Results on the same dose then hopefully able to reduce……
That’s useful Telian.
I am so sorry that you lost your sister. 🌹
I am on 7 mgs of Entric coated Pred now which might be less in uncoated Pred.
I agree that when we already feel terrible we are scared to feel any worse. All I seem to want to do is sleep or lie down. I have constant pain in my lower abdomen ( Methotrexate is not recommended for people with GI symptoms). My bowel and bladder swap around with unpleasant symptoms. I have just started Lansoprazole for the first time and unbelievably it seems to be helping. I stopped Tocilizumab for 4 weeks ( because of persistent infections also antibiotics) and felt better, then suddenly had all the symptoms of a PMR flare. I had one Tocilizumab injection and the symptoms receded. Then I learned that my Liver blood test results were abnormal. Sarah wants me to stop Tocilizumab and start Methotrexate. I thought Methotrexate was bad for the liver and kidneys too. The last thing I want is to feel worse. It’s hard to know what to do. If I could feel sure it would help, I could put up with bad symptoms for a finite period. I have already done that with Tocilizumab. I just cannot believe that it will be helpful.
They test your bloods regularly on MTX & any issues with your Kidney/Liver are picked up long before any symptoms show.
I already have liver issues. Sorry I am annoying you rather than Sarah.
How often do you have your bloods done?
It’s gone to pot a bit with Covid 19. Nobody prompts me. Maybe 3 times this year at my request. Then I’m in Sheffield and Sarah’s in Leeds. My GP neither acts on the results or sends them to Sarah. Continually progress chasing.
Well they won’t/or shouldn’t issue a ‘script without recent bloods
Have you set yourself up online and agreed to see your medical records? You can check on blood test results as you like. Very useful. The NHS app and Patient Access offer this service. But you probably know this already! 💐
I have this option & the Graph on PA is very good to monitor & the results are very easy to read. The Results are often on the NHS App before they are in PA 😉
My GP practice has blocked access to the on line service unfortunately. They strike me as an organisation under siege at the moment. The doctors all seem strained.
Same with mine. Huge warning notice on their website about high demand and problems with clinical and admin staffing. Only phone in if you are extremely ill. E-consult sometimes flashes up for a short time in the morning then is shut off again. Not allowed in door without appointment. Phone answered by defensive receptionist, if at all, who has clearly been told to get rid of callers. Asked for prescription a week ago. Still nothing. Request stuck at GP stage. I think she may actually be running the practice?
People aren't going to them when they are extremely illl - they are heading for A&E, and they need to go to A&E because they weren't able to see a GP when they were only moderately ill tp stop the situation getting worse. My daughter is in A&E, says all she hears is "I couldn't get to see the GP" and it is manic.
That’s interesting. Such a post code lottery!
"If I could feel sure it would help, I could put up with bad symptoms for a finite period"You can't EVER be sure - but you can't condemn the drug out of hand when you haven't tried it at all.
Sarah wouldn’t recommend taking it if there wasn’t a chance it might work
I do trust Sarah. Anyway, thanks for your and everyone else’s input.
I tried MTX because I trust my Rheumie, I didn't get side affects, but also it didn't help me to lower....so after several months I stopped it. It has been suggested the only thing left to try is Leflulomide, but I've read here and there it can cause Myopathy, which I am do to have tests for, so at the moment like you I'm apprehensive....Like you fatigue is my worst sympton....horrendous....
We'll get there one way or another!
Thank you Jane. So sudden and younger than me. All I can say is I do put my utmost faith in Sarah - which deep down I think you do. Lots of symptoms to contend with there - think
I’d go with the flow. You can stop it any time - SM say it needs 3 months to know if it’s going to work (I asked). You’ll get lots of support once you start MTX. I’ve already had bloods and a chest x-ray.
Good luck 🌺
What a shock Terri and so sad.
Re Methotrexate, I wonder what success would feel like? I do trust Sarah she has been the best thing about this illness along with the forum. I find LVV/ GCA much harder to read than PMR. I just feel ill and exhausted, sometimes it’s hard to walk but not often and now I have quite bad GI symptoms. I worry that more chemicals will just make me feel more sick.
I wish you a really bright new day on your new drug! I guess sometimes it just has to be a leap of faith. 💕
Hello Jane, I’m sorry you are having such a rotten time. I started MTX six months ago full of dread but am now very pleased I did. I don’t have LVV and my longstanding PMR reclassified to seronegative inflammatory arthritis so probably not apt in your situation, but I do feel so much better than I did a year ago and down to 0.5mg Pred daily again. Had mild nausea with MTX and some hair loss (similar to when I first started on Pred really) now fine. Liver enzymes been ok and I still drink some alcohol. I actually feel well again. Everyone is different but could be worth a try - and you can stop it anytime. Hope things improve for you very soon x
That’s reassuring Maisie - MTX has a bad press BUT if it works it’s worth a shot!
Well I need to thank you MrsNails for all your advice and support last year especially. I would have been very lost without this forum and everyone on here 💐
Thanks Maisie - l know there are more people on MTX on this site but very rarely post - l keep meaning to ask Fran_Benson about conducting a Survey to give us an idea……
I feel really good on it now - hope I haven’t jinxed myself. I dip in and out of the NRAS forum and it seems a big range of responses to DMARDS/ biologics etc. Thank you x
That is encouraging Maisie. Poor old hair, it’s just grown back. I can’t remember when I last felt well - before Tocilizumab definitely. I have Psoriasis on my feet and Psoriac Arthritis has been mooted. Methotrexate would be appropriate for that I think.
I think if the hair loss had continued it would have been a deal breaker, probably only lasted about six weeks though alarming at the time. Re growth immediately. I added biotin as well as the folic acid increased to 6 tablets a week. It will be interesting if I can get off Pred completely - nearly seven years taking it now.
My PMR- or whatever it is, has always waxed and waned for no apparent reason so I might just be going through a good phase atm. All I can say is my excellent rheumatologist really recommended starting MTX - and believe me I was horrified at the thought, I would now fight to stay on it, just 15mg once weekly. My friend with RA didn’t get on at all well with it so it does appear you just have to try it and see. All good wishes x
6 years for me February just gone. Do they prescribe biotin as well as Folic Acid?Maybe the Anorexia will shift the weight.
Biotin not prescribed but easy to get. I’m a walking Holland &Barrett shop. I split the MTX dose am and pm (adapted as per PMRpro ) - Pred with yoghurt, MTX with cheap white bread toasted and lots of butter a couple of hours later (delicious) and then second lot of MTX tablets evening after a high carb dinner, the carbs seem to put a stop to any nausea- a bit like pregnancy morning sickness! I’m actually losing weight slowly as I feel better and not comfort eating. I sometimes get headaches but if I drink enough water ( thank you MrsNails ) that doesn’t happen. I haven’t had any problems with fatigue at all on MTX strangely.
All I wanted to do was continue on Pred tablets as they worked wonderfully on low dose for years then something seemed to change sadly. I couldn’t have continued feeling so bad as I did this time last year.
There’s always other options x
Thank you for your detailed reply. That is the kind of information I am looking for. How to live with it. CARBS!? Now you’re talking. 😁
My sister has RA tried MTX it gave her too much nausea...we are all different.
As Maisie says Biotin plus Folic Acid 5mg everyday except MTX Day
I mean l’ve given up on my hair but it was a price worth paying
I take Biotin once along with 1mg of folic acid daily (except no folic acid the day of my MTX injection). So a total of 7 biotin pills weekly and 7mg of folic acid weekly.
So I’m confused about the total amount of folic acid people are taking each week. I started at 5mg weekly (not daily), and upped it to 7mg weekly to address some minor irritation of my gums. I don’t have any nausea on the MTX, or fatigue, so I’m wondering if that’s why I have a lower dose of folic acid?? All a learning curve here.
My lovely Dr Lim started me on 5mg Folic Acid 6days a week - none on MTX Day Dr D said once a week but l said l’d always taken it 6days so he kept to that.
I think to be honest they are not 100% sure what’s the best dose - that’s why it varies but if you are having any issues it’s possible to increase with the OK from your Rheumy or Rheumy Nurse.
You are having such a rough time, no wonder you feel dispirited and fearful of adding to your already generous symptoms! You seem to be between a rock and a hard place with the proviso that you have one of the most able experts in the field advising you, and the possibility that the right drug could give you the support you need. I so empathise but if it were me I’d give it a whirl in the knowledge that I can stop if it doesn’t work (but would give it a fair trial). In all truth, given what you describe, it would be hard to make your symptoms worse and may well make them better. Very best of luck and big gentle hug.xx
Thank you for your kind post Thelmarina. This has been a helpful exercise for me, listening to all the various experiences and opinions. It is just what I needed before talking to my Rheumatologist on Monday. If I commit to a course of action, I like to fully commit. I wanted to be sure that I could.
I know I am one of the sceptics - but even I say you have to try it because at worst you might not feel unwell with it and at best it might well help you.
Dasgupta swears by leflunomide, Dejaco says he's never had any success with it but has had good results with MTX. It all seems to be based on their personal experience - and that applies for us too. It might work and your liver might be fine. But you only find out when you try.
Nausea was the least of my problems with MTX - and even if I hadn't stopped when I did, I'd probably have had to stop once OH was ill, I had to be able to function 24/7, there was no other option. I had just about got my head around trying LEF until the statin mucked things up - but both LEF and TCZ are questionable for me because of a history of contact with TB plus BP and cholesterol problems already. But i'm in the same boat as MrsN - thought I was doing OK back at 12mg but had a nasty flare this last couple of weeks and it has taken 20mg to feel human. It could be the whole situation catching up, in some ways I hope it is, but who knows.
I have always functioned better on Pred alone but the insidious effects have caught up with me.
Yes - I function really well on pred alone and I don't have any identifiable problems except now some thinning skin on my shin - but the dose I need is now starting to creep up. Hopefully this is a temporary thing - I was doing really well until Covid appeared and the Pain CLinic disappeared. Maybe it will be back ...
I hope so.
I can actually feel my symptoms worsen through stress. Had got to 7mgs, then a dear friend died suddenly, loads of helping young ones in the family, helping brothers (79 and 82 respectively) come to terms with not driving etc. etc. Familiar PMR tightening of shoulders and back to 7.5 mgs. Rheumy will not be pleased but what to do? I’ve been on steroids for 4 and a half years and so grateful for them, even with the downsides! This wasn’t meant to be about me but you! No surprises about your flares. We just have to keep faith and ride it out xx
I don't at the time - but shortly after it's like being hit by a train! 3 nights of 20mg (I take Lodotra at 10pm, releases at 2am) and I feel almost human this morning - but what I have noticed is that if I am even half an hour late taking it, I can feel the difference in the morning. Will have to fess up on Wednesday - never been this high before.
You have had such a lot to contend with so no surprises there. Alongside the exertion of caring for someone is the huge gap when they are no longer there. It takes time to fill that gap - thank goodness we can get medical help. You are pretty amazing! ❤️
What has been surprising is that it took 4 months to hit! I hope I misunderstood the lady I just met in the village whose husband died about 4 years ago in similar circumstances except no Covid so she was able to get social support and has family here. I'm sure she said it gets worse - god help me!!!!!
I doesn’t necessarily get worse - I think it depends on individuals -and the fact that your daughters were there at the end will help in the long run, if not just now.
As you know my situation was similar to yours, no close family at hand - one 200 miles away, the other 11,000. The support doesn’t rely on distance, it relies on your relationship as a family.
And as we know, different reactions whether physical and mental occur at different stages for people.
There is a lot to process , both on a personal and logistical level - which nobody realises until they go through it.
Your life has been thrown upside down -and you are doing most of the practical/legal changes on your own. I know you are very capable of that, but it’s still down to YOU.
Stressful enough when you are fit and well, doubly difficult when you are unwell, grieving and your routine for the last couple of years has disappeared as well. That may have been very difficult - but it was a routine - and we all know what happens when routines go up in smoke.
I does get better -and you won’t let it take 4 years ❤️
"I know you are very capable of that,"Don't feel it! Did I say - I'm sure I was told all the pension stuff would be notified but I looked at the joint UK account and discovered his pension was still being paid. "No madam, nothing here ,,," So there was that to do - and now I have to find the stuff for claiming survivor's benefits. Not sure I trust my marriage certificate to the post! In one place it suggests photocopies aren't accepted but in another it tells you how to get a photocopy certified as being OK! I just don't have a clerical mind ...
Then I checked the German one: "But madam, we sent it out the end of January". It goes to the local office here: "No madam, nothing here - but another German one took 6 weeks recently" Just as well I'm not desperate for the money! The Italian side was very quickly sorted and even the vastly generous extra on a UK state pension only took a few weeks!
Even in this digital age, so often the original is required. If you were in UK you could probably get a “certified true copy” of certificates from local registrar…but obviously that’s not possible. You should be able to post with track & trace or similar -or even courier rather than post.
Surprised you are having issues on the German side of things -would have though they were spot on with such things.
Oh hahahahaha - I got a condolence letter from Scotland that was sent with one of the expensive options - took 3 weeks. And the first RBS card reader, sent tracked, took over 6 weeks, the second, sent as replacement took over 3. Track and trace or the like existed pre-Brexit and sort of worked. Doesn't seem to now.
The only copy I have is a Certified True Copy which is what confused me, never had any other sort. But the rubrics SOUND as if I can copy it and have it witnessed by one of a certain selection of persons - I have a former ombudsman here in a couple of weeks, he'd fulfill the requirement. I might have to email someone and ask,
Being a dinosaur when it comes to digital technology doesn't help of course - though I do have an iPhone camera now and have email on it (no SIM card, seems a waste of money) . Have to do something - the passport needs renewed by June so it has 6 months on it.
Yes I had to get the local post master to countersign something - can’t remember what it was now - probably OHs military pension ( that’s another laugh, but better than a kick in the teeth as they say!)
Just get passport sorted asap - just one more thing- but there’s likely to be more of a rush this year as places are opening up…..
All very confusing and time consuming especially while grieving and dealing with multiple countries/languages. All you can do is your best and ask for help if need be.
Here in Canada I recently applied for a pension credit split with my ex-spouse. It required some “certified copies” of marriage and divorce certificates that could be signed by a range of professionals (so I used my dentist). As an administrator for years I had confidence I could manage through the process, but it was still a challenge. All documents were received by them July 9, 2021….no decision yet! Notarized copies require a lawyer’s signature I believe.
Having been through the trauma of the complexities of my mother’s affairs, following her death and financial irregularities that came to light, I deeply empathise with you. Although to lose a husband it quite different to losing a mother. Is it possible to obtain copies of your marriage certificate from the UK ( if you married here that is)? I ended up with several copies of all important documents. I spent months veering between seething and despairing. I got the assistance of a warm and practical lawyer in the end, that really helped but took a sizeable chunk of what my parents had left. I have a large filing cabinet full of documents that I still daren’t dispose of. Organisations and people who make this process easier are never forgotten for their kindness. It is so difficult to cope with all this when you are grieving. I am so sorry.
I don't think that is a problem - absolutely everything was jointly held except one bank account in the UK which is mine and his here. I do have to see about the property in the UK, all jointly owned but I haven't a clue what i have to do for that except find a solicitor ... I want to put one of the girls as a 3rd person mandate on the bank accounts but to do that it is either an absolute maze or have a UK visit. And I can do my passport at the same time then.I just don't trust the post - it was all OK pre-Brexit. Now for some things you might as well be in Timbuktu!!!
I am beginning to tremble just remembering the stupid obstacles that occurred. Having your daughter as a 3rd person mandate is a sensible idea. Especially if it means she can act on your behalf in the U.K. we did our Wills after it was over, leaving nothing to chance.
It was silly things, like needing the will in German or Italian, I found hard. I was really annoyed the Notary hadn't said when we lodged our wills in 2013 - then we could have written it by hand and had it attached as is normal here - handwritten doesn't need to be witnessed. In the end it wasn't difficult as I found a Brit I know who's lived here for yonks and whose German is good to correct a Google translate effort - he wouldn't take money and the affidavit cost 16 euros (everything costs here ....) But the whole "how on earth do I do this" sent me into meltdown a couple of times - no-one knew what to do! Not even the Notary!
As for digital banking ... Luckily the ban here has a branch, and real people. Who sort things out for you 
My DIL really struggled even with power of attorney with sorting out her mother's finances when she had to go into care, took months, she had to prove so much time and again....why is it all so stressful....but most of all, why does it take so long!
I know - a mini version was the attendance allowance we were told we didn't need in November, by December he couldn't be safely left alone at times. We reapplied in the summer, July. They rang when the girls were here to arrange an assessment for a week or two later. I said they were welcome to come - if he lived that long. He died on the Friday, they were to come on the Tuesday morning, Monday was a public holiday. We sat here waiting - and no-one turned up! I had to fill in forms to extend the application back in November and they phoned to make their assessment a week or so ago. Absolute farce - had we had the money while he was alive I would have got someone to come and help but I was terrified it would go on a long time and I'd have nothing to live on. Our savings are my pension since I was self-employed.
That 's disgusting, but sadly not surprising....ok so they have to be sure, but there is no empathy for the situation people are in anymore.....My DIL had a lovely care home lined up for her mother near to where they live, twice she nearly lost the place because things took so long.....thankfully it finally happened.
It seems no country is better than the other....the Admiral nurses (for Altzeimers) gave advice to DIL, and many years ago my mother got excellent help from Macmillan nurses, they overruled her dreadful doctor.....
There is nothing worse than having financial worries on top of all you had to deal with....and the damn PMR as well!
I'm like you as far as the technical stuff...well.....everything is download an app!.....this makes me so angry many people can't!.......so unfair!
I hope when things settle for you and you feel better you can make a decision on your future......
Looking back, in Scotland when he had the first cancer diagnosis it all went very quickly. He got a phone call saying he'd not filled in some of the form - could he cook a meal for himself hadn't been answered (and a few more). He said he couldn't anyway! The woman laughed at him and said that wasn't the point. All we wanted really was the parking badge - in fact we got quite a decent donation in the end. As it happened he was in the NHS and got 5 months paid sick leave at the time and he extended it by working part time for most of his treatment - his boss was amazing. He even had accrued leave which he took to have radiotherapy by which time he'd "earned" another month of sick leave so we used that for a recuperation holiday. But that attendance allowance because the word Cancer was mentioned would have been a lifesaver if he'd worked anywhere else, as it was, it saved a lot of worry. But I gather it is a very different world now.
I'm very happy here at present - I will have to come back at some point for the girls' sake but not yet I hope.
My MIL said it took four years!! You’ll find you way.🍀🍀
What aspects took her 4 years? In a lot of ways I'm fine - if left to my own devices. But as soon as I MUST sort something out that forces me out of my comfort zone it isn't - but they are things that have terrifed me for years! And some of them I do mean terrified!
She said “it’s after 4pm (especially in winter) - the nights are soooo long”. She coped very well during the day.
Oh no, no problem there! Spent all my evenings alone anyway. He watched old films - I'd rather poke my eyes out!
I wouldn’t go that far!!😂 Know what you mean though!
You spent an unusual lot of time alone so it’s just an “extension” of the norm. Learning to travel alone may be more difficult for you.
The tasks that arise are terrifying and can be emotional too.
My own view is that the psyche goes into shock, it’s like ice slowly having to melt and restore your equilibrium. It doesn’t get worse, you adjust, there are freedoms as well as missings. Some years before he died my husband said this to me. ‘One of us is bound to go before the other and the one remaining must live life to the full - otherwise what was all our love for? ‘ It takes its own time. I found that I returned to some of my own ways, I was the extrovert he the introvert but it was through the filter of all I had learned from him and our relationship and that is very exciting. 💕
I do like the freedoms I have back, But the 2 years of Covid have created an environment that is so restricting - mentally too. Before I'd have just hopped in the car and headed north without even worrying about getting a ferry ticket either way. Not even sure I can do that now. And a little bit of fear/unknowing about what restrictions I might meet at the ferry port while coming back. They might not let me in to travel home here. Freedom of movement is no more ...
Any chance of one of your girls coming back to help, now that you have a better idea of what needs to be done?
Both of them are working all the hours god gives and rarely get more than one day off at a time - NHS rotas are evil!
Yes Covid is a even more of a pain in these circumstances. And I realised I had become a little institutionalised over the last couple of years. A leap of faith to don a mask and enter M&S!
It actually made some things easier when he was ill (I wasn't locked in because of him but because of Covid) and I've had to go shopping all along, no internet options here at all - put your mask on and go or starve! But negotiating the hurdles until now has been a real minefield - wasn't even sure I could go shopping up the road in Austria even! Just been shopping - had to be the Big Spar because of what I wanted, only they sell it. Must have timed it fairly well - shops was heaving with tourists buying the things they think are cheaper/better here than in Germany (pasta and vinegar, the shelf is half empty, seen it before!) but no-one at the checkouts which was something. Never mind - they're all heading home after Carnival now!
I thought restrictions of movement were finished now. I believe they are in England.
Tests only finished last week. And the passenger locator forms are still a thing aren't they?
Would that matter?
It is all the little things - and I watched the girls do the locator forms when they were here!!!!! Took half the morning ...
I’m just getting all mine ready to shred from our trip in January & l’m getting updates re France as n when, so l won’t bother about that until nearer the time.
“The last” straw! However you would be ‘working’ ‘planning’ for your first visit to your family in England.
I am sorry that you are struggling so much. I have had slightly elevated Liver tests while on Actemra but my rheumatologist has felt the results were not severe enough to stop it. I do take it every 2 weeks instead of weekly now and will be trying to increase the duration between doses. I took Methotrexate for 3 months when I was first diagnosed with PMR because I kept flaring every time I tried to reduce the Prednisone. It didn't help me taper the Pred, as my Sed Rate continued to rise while I was on it and the fatigue and nausea were truly awful. Once I was diagnosed with GCA, Actemra was prescribed and for me it has worked very well as I am now off Prednisone.
That is interesting and these are the stories one hears about Methotrexate. In fact Maisie’s was the first positive I had read and now Dad2Cue. Of Mrs course Nails is a big believer.
Thank you Dad2Cue I always appreciate your thoughts.
It is unfortunate that there is no way to tell which drug will help you without trying it. The worst thing about Methotrexate is that my Rheumi said it takes AT LEAST 3 months before it starts working so after 3 months of it not working he wanted to increase my dose because he was convinced it could work if I took enough of it....but I said I wouldn't do it....too much of medicine is still trial and error
What a trap that feels like. 🙁
This is a bit of the subject of metho but have you ever tried gluten free for a time for your tummy problems. Maybe worth a try for a couple of weeks. This just popped into my head 🙃Bye…..
Yes. My son is gluten free so it’s easier if the three of us follow. I think it might be some form of opportunist infection allowed in by Tocilizumab. It’s better than it was.
My cousin has been on mtx for RA. Her liver enzymes got high and she was off it for a while, and they returned to normal. I believe she takes it again now. I'm sorry I don't have more info for you. The Atlantic lies between us and she has never wanted to talk much about her health problems. I do remember when I visited her a few years ago I was on 2.5 mg pred and therefore had a supply of pred with me, which she eyed enviously. I offered her a few tablets, but she refused! But I think she was tempted because pred had made her feel better than anything else she has been on. Mtx has its downsides but there must be very good reasons why doctors prefer patients to be on it rather than pred, at least when the pred dose has to be above a certain level.
Thank you Heron. I am trying to get my head around why doctors are so keen on less effective drugs than Prednisalone like Methotrexate and Tocilizumab with equally, to my mind, potentially, life changing side effects and that seem to make the patient feel pretty rough, when Pred makes the patient feel better, relieving pain, stiffness and in my case the depression of the disease pretty instantly as well as being the only drug proven to safeguard eyesight in GCA. It is hard to come off because it works. Not like opioids involving addiction either. Nobody can forget being able to step into a bath finally within perhaps hours of the first doses. Nothing else works like this, whatever blood tests tell us.
Thank you Jane, for posting this. I think you know that I am due to start MTX soon, as the allocation of TCZ comes to an end. My Rheumatologist has reassured me that MTX is not just a "steroid sparer", but alters the course of the disease too. I truly hope that it works well for both of us.
We can hold hands and jump in together. I didn’t know that. I thought it was just palliative like Pred - instead of Pred.
Hello SheffieldJane I have been on mtx for at least six years now and ,never had any problems with it apart from some bruising at the beginning.I take 20mg a week orally.
I know some people do have problems, but I can only tell you my experience with it.
Take care
That is good to know. We don’t hear from enough people who are just quietly getting on with it.
Jane this is what l’ve said about MTX before - there are far more people on this Forum taking MTX than most people are aware of but just keep it to themselves.
Unfortunately, many people dismiss it as ‘bad’ ‘too many side effects’ etc (even if they’ve never tried it)
It’s good to see people coming forward to say how they are doing & it is working…..
There was a study to compare the perceptions of the rheumies with the patient's experiences with MTX, Rheumies predominantly felt it was wonderfully effective and caused no problems. The official figures were that about a third of patients found it didn't help their RA at all after 6 months, another third-ish couldn't cope with the side effects they experienced or had raised liver results or other concerning lab results and a third found MTX worked well and didn't cause them any side effects that bothered them. Which actually - isn't too bad a record really, But that IS for RA.
Yes, and there is scant evidence for our conditions. It would be hard to list the benefits unless you were stuck at a high dose of Pred with some of the serious side effects and it enabled you to get down. This is not my situation. I think if I swopped my Entric coated Pred for uncoated I could probably get down to 6 or 5 mgs. Entric coated feels weaker somehow. Aargh!
I think the number of rheumies who push it for PMR patients does suggest it can help in some cases and I do know several who have got down to lower pred on it, a couple who even got off pred. My figures were meant to show that the SIDE EFFECTS don't apply for that many really - and it MAY help. Which you only find out by trying it. THEN you can chuck it out if you don't benefit.
I don’t take mtx to reduce my pred,it’s because I have RA,I have had to miss two weeks because I have had the fourth covid jab and also the shingles vaccine.At the moment it seems the shingles vaccine has given me problems, I have had a rash and pains so using steroids cream fingers crossed it’s not the vaccine just coincidence.
I agree, and helpful to others, especially when our treatment options are so limited and we often have co- morbidities in our age group.
Tocilizumab 
Tocilizumab
Tocilizumab was refused.
Tocilizumab in the UK
Vasculitis/Tocilizumab
