Newbie seeking support/advice. nzbee

General
1

Hi, I am a newbie here. I am in New Zealand and have very recently been diagnosed with inflammatory arthritis, we suspect psoriatic, as I get areas of dry scaly scalp, but not 100%, as it wasn’t active at my specialist appointment.
My symptoms leading to diagnosis were, aching hips, feet, neck, back and shoulder joints, terrible fatigue, night sweats. I work as a gardener and am pretty fit so this was a huge shock. It has impacted my work, thankfully my wonderful clients have been open to changes of time and day for visits so i have kept working but it has been a challenge.
I did 3 months of NSAID which did absolutely nothing, but you have to follow the process in our system. I am currently taking sulfasalazine and prednisone. They are making a difference but I am seeing the specialist soon and want advice on prednisone. Can you just stay on it?, what will it do long term?. Would it be better to try methotrexate?. In New Zealand you have to go through many trials of drugs to get biologics. I am just at the start of this process.
I am a pragmatic sort of person, I will follow the Drs advice and am living for today. I want and need to keep working, I love my gardens,and taking care of my family and home. The long term drug impacts are a concern but really no one knows how long they get and i vote for quality of life now.

Thanks for any suggestions, nzbee.

2

Hi nzbee! Sorry to hear about all your pain and how it has affected your job. I’m sure the exercise of gardening is tiring, but also being in motion is good for your arthritis, although I know it probably wears you out! I always felt that if I had the stamina to be in perpetual motion (just movement, not strenuous) I wouldn’t have all the stiffness. But, just thinking about being in constant motion makes a person tired! And, fighting the fatigue to keep moving–it IS nearly impossible!!!

I don’t recommend too much prednisone. It has its benefits, but long-term has some drawbacks. I’d research it if I were you to know what it can do to you. I had prednisone bursts a couple times and it made me feel so good short term. When I went to my rheumy to ask for more prednisone, he refused and said it wasn’t good to take to much of it. That was enough for me–I haven’t had any since. But, I was lucky that shortly after that I went on Enbrel and it has helped a lot.

I hope you can continue the process and move along quickly to qualify for a biologic. You will probably start methotrexate soon and it seems to help a lot of people. Good luck, and I hope you can continue doing the gardening, too!

2 Likes
3

Hi there @nzbee… welcome from a fellow kiwi :slight_smile:

Sounds like you are in a similar place to me as far as diagnosis is concerned (inflammatory arthritis, most likely PsA). I always feel sorry to hear of anyone else who finds themselves in this, or a similar, position, but am pleased you found this forum. The people here are all awesome!! And have given me a wealth of information and support, as they will for you!!

As for going through the pharmac protocols before you can get on the biologic meds here. I think I’ve got a pretty good understanding… the same as most places… fail 2 DMARDS (or be unable to take them), I’m not 100% sure of it but think maybe having to be on prednisone for 3 months (with a DMARD) and unsatisfactory benefit comes into to it to.

Anyways, the sulfasalazine is DMARD number 1 for you… Methotrexate (Mtx) might prove to be DMARD number 2.

I’ve been on Mtx for over a year now (started out on 10mgs and the dose was slowly increased to 20mg)… Initially I think it was a little helpful for the fatigue and has definitely made a difference to the minor psoriasis issues I had, but it doesn’t seem to do much for the arthritis… I keep taking it though mainly because my understanding is the Mtx can be helpful in preventing developing anti-bodies to a biologic. We have just added Leflunomide to the mix as a trial (I think if the Leflunomide doesn’t work, that’ll be my 2 DMARDS so then maybe we get a look at biologic, not sure if I’d need to do the 3 months of prednisone or not).

As for NSAIDS… I found ibuprofen about as helpful as sucking a lolly would be (perhaps even less so) :laughing: But, I have found Tilcotil (AKA Tenoxicam) does reduce pain levels by probably 25-50%… and boy does my body soon let me know if I’ve missed even one :blush:

Just a note regarding Mtx… I had read some horror stories, and all of the possible side effects too, and was a little nervous of taking it, until I read somewhere on this forum that we need to remember the dose amount we take for PsA and the like is miniscule (usually up to about 20 - 25 mgs per week) when compared to the dose used for chemotherapy (perhaps a few hundred mgs in a dose)… when I first started on the Mtx I had a few issues with having a Mtx “hangover” for a day or so after taking it, and getting a few ulcers in my mouth (sometimes quite painful ones)… but by dropping back the dose and then slowly increasing it back up, taking it late at night, increasing the folic acid to 5mg 6 days a week, and drinking heaps of water with it and during the next day I can now say I’m having no noticeable SE’s at all from it.

Please don’t be afraid of trying the Mtx, unless you have a good reason to be. It can do a lot of good for some… although I’d say the benefits I have from are minimal, perhaps it is helping to keep the PsA from going completely rampant too… the only way to be sure of that would be to stop taking it, and at this point I’m not prepared to take that risk.

As for the prednisone, yes, it sure can have some nasty effects and doctors are getting a bit toey about prescribing it… but… in a low dose for a short time (like maybe a few months) I don’t think it’s soo bad, as long as you can tolerate, and don’t suddenly stop it, it’s one of those things that you need to wean down from. I have found being on prednisone was the only time my ankles have not had pain in nearly 2 years… unfortunately, a long term dose at the strength needed for me to get that level of response is not an option (I was actually give the prednisone for asthma, not for the arthritis, and I found for the first time in years I was actually able to function at what I would think should be a normal level for me).

I completely agree with you about quality of life now being far more important that length of life… I’d rather take my chances with the meds that might prevent me from needing to be in a care facility for many years, later on, due to being unable to care for myself because of badly mangled hands, feet, etc etc etc. I never thought I’d ever say something like that, and have never felt comfortable taking meds for anything, before this hit…

You are doing the right thing by learning as much as you can about options for you. You mention a rheumy appt. soon, ask your rheumy about where to from here.

Do keep us informed of how it all goes for you… it may be a long road ahead, but there is always a chance of finding the right med for you fairly quickly too… will keep my fingers crossed for you on that score :smile:

4

Welcome Melissa, nzbee! We’re glad you found us, even if the price of admission to our “club” is a bit high. :wink:

Yup, it’s like this in many parts of the world. The people paying for the drugs (that would be the government in some places, insurance companies in others) want to make sure that you’ve tried all the cheaper alternatives before they start paying for the big ticket medication. Can’t blame them, but the only medications conclusively proven to prevent PsA damage are the biologics. So working your way through the DMARD menu is well worth it, and if none of them help, usually a biologic will. The frustrating part is the months and months that pass while you try this drug and that.

Where are you in NZ? (my favourite country on the planet!) Janson, I believe is on the north island.

Seenie

1 Like
5

Thanks for your kind reply. It’s nice to know there are people with experience of this process and medications and who understand.

6

Thanks so much, great to know there is another person from NZ here as well.
I will certainly be asking lots of questions at my next rheumy appointment. It really helps to hear from others who understand what this is like. :slight_smile:

1 Like
7

Thanks Seenie. I am in the South Island of NZ, and yes Jansen is from NZ too which is great. I hear you on the “Process” of months trying something that isn’t helping just to tick a box on a form. That said my current meds have helped about 60-70% I would say. No more cracking headaches either which is wonderful. As long as I can get around and keep being" Me", working and staying active I will be very thankful.

1 Like
8

Hi NZbee,

I’m over the ditch - there are probably a few small differences in our medication systems, but they are pretty similar.

Soooo, a few things I’ll let you know from my experience.

Prednisone almost always make things feel better. Hence, if you started pred and sulfa at more or less the same time, the amount of knowledge you currently have on whether the sulfa woks, is, unfortunately, zero.

Short term pred in most of the world is 5 DAYS, not multiple months. Australia and NZ are outliers in this.

I took prednisone for 9 months, the last three of which was a taper (or weaning off it). Ever given up smoking? If you have to taper off that length of prednisone, you’ll be wishing you had to give up smoking five times over rather than do that Prednisone taper!

Then there are the side effects, moon face, unable to sleep (though that’s not always a negative with PsA), weight gain on your tummy, always hungry, possible osteoporosis (I was right on the line between osteoporosis and osteopenia in my lower spine - age 37, when my Rheumy switched me off it), and at higher doses of you get unlucky, hip necrosis.

So why did I take it for 9 months? Well my option was that, or lose my job and become less than functional for my family, because of the med regime here (and probably there too). So, I’ll be the last person to say don’t take it (I’m a quality of life person too - unfortunately the “long term” issues with steroids tend to start turning up in months to a year, not in 20 years time).

So, whilst I’m not saying don’t take it, I’d encourage you not to let a positive response to it to mask your disease such that you don’t get into DMARDS that work ASAP.

There are caveats to all of this - non-physiologic doses (less than 7.5mg per day) tend to have less issues, and there was a trial that showed early treatment (soon after onset) for 3 months had a mild DMARD effect (though that ceased around the 3 month mark and then side effects started to kick in soon after, if they hadn’t already).

So, the thing is, it may be useful for the first couple of months, but I can only think of one forum user who has stayed on it long term, at 5mg, but it only works for him in combination with Humira, a biological DMARD.

If you can research the options for DMARDs before you go to your next appointment, that will put you in a good position to make decisions with your Rheumy.

1 Like
9

Hi Jen,

Thanks so much for your reply.
You have confirmed what my other reading on prednisone found. I will be seeing my rheumy on Monday and we will now be having a different talk about the prednisone, and weaning off ASAP. I did this at the end of my first course and it was OK, the pain came back but no other issues so fingers crossed.
The sulfa does some shall we say interesting things to the digestive system, but no other issues for me at this point. How good it is remains to be seen once we take prednisone out of the picture. From what others have posted it seems the biologics are the best treatment but I will probably have to try methotrexate first.
It is frustrating when you are a fairly straightforward person to have this maze of meds to try for various time periods. It’s the impact on my ability to get on and do all the normal stuff I am used to that drives me nuts… ( I often say it is driving me to the crazy house, and we were already in the car park) I just want a regimen that works and limits damage, as pain free as possible, and lets me plan ahead and be confident I will be able to do what I planned. AHHHHHHHH!.. I am a planner and a doer and this is the impact I am really feeling.

Thank you for letting me rant a bit, I am sure you get it.
Melissa.

10

I sure do get it :grinning:

The meds maze can be a hard road, but worth finding your way through. Sounds like you have some good info though, so with persistence you will make it through :grinning:

11

Hi there, I’m Kath and new to this forum too. Also newly diagnosed with PsA six months ago. In the UK the criteria for being offered biologics is also to have tried two DMARDs that haven’t worked before you can get a biologic. I’ve been on Methotrexate with Folic Acid since early August last year and, along with corticosteroid injections I’ve regained the use of my hands and can walk again, for which I’m thankful.

However my inflammation levels in my body are still very high and my Consultant is concerned about joint damage, so he added in Sulfasalazine just before Christmas, with a view to reducing the dose of Methotrexate over time (because it’s affecting my skin and hair too much). But the Sulfasalazine makes me ill and interacts with my anticoagulant that I have to take for a DVT (caused by my PsA) so I can’t take it. So, yet another steroid injection with 25mg Methotrexate per week, which is only just keeping me going. My disease is very active.

It’s really hard when you need your body to work well and it doesn’t! So I really empathise with you. My PsA is widespread in my body but the very worst affected are my hands and wrists. As an artist, writer, cook and blogger it’s pretty awful to have to stop doing what you love.

BUT there is real hope on the horizon! My Consultant has asked if I’ll volunteer to take part in a Clinical Trial of two biologics - one is Humira (also for RA) and the other is a newer biologic specifically targeted for PsA and Psoriasis. It’s a double blind trial and lasts about 76 weeks - 52 weeks actually on the drug. I won’t know which one I’m being given and neither will my Consultant. It’s being run by a Swiss pharmaceutical company to ascertain which of the two biologics work best for PsA. I’ve also signed up for genetic testing to try and find a genetic link, which is suspected.

I’ve had my preliminary test for suitability and so far so good. I now have to stop all medication for four weeks to clear my system, then more health checks before, hopefully, being given my first dose by injection. I’m expected to flare over the next four weeks after stopping Methotrexate, but that’s fine. It’ll give a better indication how well and how fast the biologic starts to work.

So hang on in there!! There’s always light at the end of the tunnel.

I also find that following a healthy eating regime helps. Plenty of anti-inflammatory foods! I’m writing a blog and starting a website outlining this.

Try to stay positive! Good luck and lots of love xxx

2 Likes
12

Hi Kath, glad to hear from another newbie. The trial you are joining sounds really positive. Sorry to hear that psa is stopping you from doing favourite things and work. I have been lucky that what I am on right now means I can manage at work and have less fatigue. Before treatment started though I was really worried as the fatigue and aches were really hard to cope with, esp feet aching when I am a gardener and spend all day on them.
Like you I have investigated food, I have a cookbook from a rheumatology consulting group in Sydney, Australia. They have a team including a dietician. I am eating well and moving each day so hope that will help preserve my overall wellbeing.

1 Like
13

Hi Kath, and welcome!
I’d be interested in the link to your website and blog…I decided it’s time to really get serious about changing what I eat and avoid inflammatory foods. I’ve been really sloppy about eating anything and everything that isn’t good for me—chips and sweets especially.

That’s cool you get to be part of a study. Hopefully you’ll get relief from your symptoms and help a worthy cause that’s beneficial to all people with RA and PsA!!! I hope the study comes up with positive results for that new biologic!!! :+1:t2:

14

Hi nzbee I’m glad you’re managing to cope! I am too at the moment, thankfully. Luckily I’m retired so don’t have to go out to work, but to stay sane I have to keep busy! In between flares I can do most things in moderation but find my biggest hurdle is the exhaustion. Even if I feel able to do things from a less pain perspective, the exhaustion means I just can’t be bothered :confused:. But I have managed to paint three new pictures in the last six months ha ha!! Poor show really and I had to cancel my solo exhibition that was due to take place in December but there’ll be other opportunities in the future I’m sure. Positive attitude!

The trial is like a lifeline to me, and I’m crossing everything that I’m suitable to take part and that it will help me and all other PsA sufferers. I’m very lucky to have the most fantastic consultant who specialises in PsA and I was diagnosed quickly. X❤️

15

Hi Grandma_J
Thank you so much for the welcome! I don’t know if you’re on Facebook but that’s where I started my healthy eating blog, here is a link www.facebook.com/KathsEdibleJourney but it’s very lengthy to scroll all the way down to the beginning in October 2016! That’s why I’m condensing it all into a website with a Blog page. It’s very new and I’m still building the website so there’s not much there yet, but here’s a link https://kathwoollen.wixsite.com/my-edible-journey/introduction
I’m hoping to get cracking this coming week to populate it much more before the lack of medication kicks in and I flare. Have to stop all meds to clear my system before the trial begins, so I’ll probably start flaring after missing my first Methotrexate dose, that happened last time I stopped it when I had a chest infection.

If you’re interested here is a link to my art website and art Facebook page too


www.facebook.com/KathsArtPage

I don’t do any of this for money!! So I’m not promoting myself in any way. I’m retired and happily living on my pension. I just need to keep busy after having to take early retirement following the death of my son from osteosarcoma (a rare bone cancer). My consultant thinks that years of stress and grief could have triggered my PsA. But another reason I’m keen to do the genetic testing part of the drugs trial, I have a daughter and two granddaughters and all research of this kind is so important! Take care and chat again soon I hope xxx

1 Like
16

Hi Katie, you have been through so much, I can barely imagine. But, well, I hear you.

That is lovely work. I bet you get great inspiration living in Northumberland.

I’m popping in to add a note of caution about the trial. I’m scratching my head a bit, I’m not totally sure what I think so here are some half-formed thoughts from another PsA patient in the UK:

If 2 DMARDs have not helped sufficiently then you will very likely qualify for biologics. You say the disease is very active, you mention that there was a time when you couldn’t walk … this sounds like severe PsA. In the circumstances 76 weeks sounds like a long time to commit to an unknown drug. And, to put it baldly, I’d prefer that my consultant simply suggest the biologic that he or she thought would be best for me and get on it ASAP. And that would include the usual option of reviewing after 3 or 4 months with the possibility of trying another biologic if necessary.

Like I say, just my thoughts. Whatever happens, this is an interesting situation that maybe deserves its own discussion. So I’ll stop now. We can set this up as a separate discussion if you wish.

17

Hi Sybil
Thanks so much for your response, and yes I understand your caution about the trial. However the two drugs being trialled aren’t unknown, one is Adalimumab (Humira) and the other is Secukinumab (Cosentyx). Both are known to be effective but the trial is to determine which of the two works best and more quickly for PsA. I still don’t qualify for a biologic yet under normal NHS criteria, I’ve onky taken Methotrexate and didn’t take the Sulfasalazine because of contraindications, but this way I can trial biologics for my disease and help medical science at the same time, and help with genetic testing (which only involves blood tests). I’d rather do it this way than have another DMARD added in to the Methotrexate which I’m suffering side effects from. I’m sorry if my last post was a bit confusing. I agree that going on a trial of an UNKNOWN drug would be too risky!

This is quite a journey we’re all on! I’ll keep posting as time goes by and let everyone know how the trial goes, as long as I actually am ok to start it! :sparkling_heart:xxx

1 Like
18

Hi Katie,

I had the same reservations as Sybil. Knowing that it’s Humira and Costenyx eases those considerably - just make sure there isn’t a placebo arm (it’s too long to be on placebo unless you have no other option - untold damage can happen in that length of time! ).

Great news that you are getting the chance to get on the biologics soon though :grinning:. I’ve always looked at trials, but have too many co-morbid complications, so never seem to qualify.

Eventually, I did end up on Enbrel and then Humira - the Aus system being similar to the NHS, so that being somewhat of a journey!

Has made all the difference though :grinning:

Good luck :blush:

19

Thank you Jen :blush:. Definitely no placebo involved!! Just the two drugs being compared to one another. I totally trust my Consultant and I know he wants the very best for me. He’s one of the very best! Glad to hear you’re benefitting from a biologic too! All the very best xxx

20

I guess that is rather more reassuring. Though I would think that not getting on with Sulfasalazine might well count as a ‘fail’, therefore qualifying you for biologics anyway. I have found that rheumys tend to find some way of getting patients with severe PsA onto biologics.

Wishing you a great response to the biologic! They can make such a tremendous difference. And please do let us know how things go.